BRAVEHEART

birthday party pictures

2012-02-15T20:36:00.000-08:00

Elijah LOVES vintage 1940s Donald Duck cartoons. He loves watching the old Donald Duck cartoons in youtube, so that was our theme :)

The birthday cake was from Icing Smiles and Bleeding Heart Bakery made the cake for Elijah. It was gluten free, delicious and so BIG. All 3 tiers were edible.

It was vintage Donald Duck :)

We are happy that you had a great time at your party big boy. We can't wait to celebrate many many more. We love you

a very special day :)

2012-02-10T20:12:00.000-08:00

Elijah woke up very happy. He loved all the birthday songs and greetings. We went out early and got him his birthday treats, donuts and cupcakes from a gluten free bakery. It was our first time to go there and we were not disappointed. A weekly visit to the bakery is in the future :)

enjoying his birthday breakfast

I love where we live, it is very near Chicago downtown but we still get to enjoy the quaint "little town" feel.
After our breakfast we went to the Church to pray.

We then run some errands for the party tomorrow. It is our tradition to eat noodles on birthdays for long and healthy life. Olive garden makes gluten free entrees so that is where we had our lunch.

A funny thing happened during our lunch,there was a birthday celebrant sitting in the booth behind us andwhen the servers came out to sing, Elijah kept on turning his head, he was clearly waiting for them to sing him a song also. He kept on saying "mine" and "cake"

It was a very fun and special day, it even snowed. We are having a very mild winter so seeing the snow on Elijah's special daw was a very welcome change.We like to believe it means more blessings for our little braveheart. Happy birthday Elijah, we love you

HAPPY BIRTHDAY

2012-02-10T01:45:00.000-08:00

Dear Elijah,

Today you are three years old. Happy happy birthday. How is it possible that you are already 3 ?!?! You are becoming a big boy, soon you will attend school, you will meet new people and have new adventures. There will be challenges, you may have a hard time with the adjustments but we are sure that you will be fine. While papa and mama are sad that we won't be with you every second of the day, we are excited and happy to see you start a new chapter in your life.
We are thankful and humbled that God chose us to be the ones to care for you and to love you. You are our everything.We treasure every moment with you and today we celebrate even more the amazing blessing that you are.
We love you baby to the moon and back.

with all our love
mama and papa

CHD Awareness week

2012-02-07T19:28:00.000-08:00

February 7-14 is Congenital Heart Defect Awareness week. It is also the birth week of my little braveheart, so I am a bit more emotional these days.Elijah's story is really a miracle. We are blessed to have him and every second with him is truly a gift.

ELIJAH - born with HLHS , now living with an angel heart :)

I am very passionate about raising CHD awareness. 1 in 100 babies are born with a heart defect/s and while most are diagnosed in utero some are not. Some babies get to go home with their heart defects undiagnosed and for the unfortunate ones, by the time they get to go to hospital it could be too late.

Elijah's condition was only diagnosed 5 hours after birth. Our nurse followed her gut feel. She told us, while most newborns have heart murmurs, she wanted to be sure with Elijah even though he was not in distress, thats why she called in the neonatologist. I dont know what would be the outcome if we were able to take Elijah home with us.

If you know someone who will be having a baby, tell them to ask for a pulse oximetry test( placing a sensor on the baby's hand/finger or foot/toe to check the oxygen level). It's very easy, painless and should not cost anything before they take their baby home with them. This should be SOP and we in the heart community are doing our best to make this a law.

RAISE AWARENESS AND SPREAD HOPE

sick

2012-02-06T07:38:00.001-08:00

Elijah is sick :( for the past 2 days, he has been coughing and having on and off low grade fever. We are off to the pediatrician this afternoon. We are hoping that this is not something serious because little man will be have his birthday this weekend.

gluten free diet

2012-01-27T20:37:00.000-08:00

Elijah is still not eating much, at most he eats 2 full meals a day plus 2-3 bottles of pediasure. We found some gluten free waffles and donuts that he likes, so he is not missing his favorite "bread-y" stuff anymore :)

In the last weigh in, we learned that he gained 1 pound-- a whole pound in 1 month!!! that is very encouraging. We are still on the waiting list for Dr. F's feeding clinic. We have heard good and positive reviews, we can't wait for Elijah to get in the program.

Overall things are getting better, we are still having some issues with the inflammation on both cheeks(inside), it is much better than before and we finally have the dentists, and ENT on board and they are monitoring big boy closely.
We are off to a good start this year, praying that it will continue.

2012-01-23T20:45:00.000-08:00

These amazing women are Elijah's therapists from Early Intervention. For 2 years now, they come every week to help our big boy catch up developmentally. They are like family to us. Next month, the weekly visits will stop as Elijah age out of Early Intervention. We will miss all them. Thank you ladies for all your help. For teaching Elijah the skills he needs. Sometimes, (okay fine, all the time :p ) in our desire to "protect him" we fail to teach him to be more independent. Thank you for encouraging Elijah to reach his capabilities, for knowing when to push and when enough is enough and mostly for loving our boy and advocating for him. Because of all your help, I know Elijah will be okay once he starts school. (although, I can't say the same for my husband and I )

Physical Therapy with Ms. S

2012-01-10T19:15:00.000-08:00

Last Christmas, cousins Zekie and ate Yanca got a power wheels car from Santa Claus. Elijah looooves playing with the car, he likes to "drive", tinker with the wheels and even the hood. He is becoming a big boy.

Christmas day 2011 with Uncle Josh and cousin Zekie :) Elijah was sad, he wanted to be the "driver"

and because his birthday is coming up. We got him one also :) Papa Ej spent a lot of time canvassing the cars, you'd think he was buying a real car..

papa and Elijah car shopping for big boy's first car..

Holidays 2011

2012-01-03T22:17:00.001-08:00

A real Christmas tree :) Another "first time" for Elijah. I love the smell of real pine trees. I think it is also prettier, it was more work because I had to vacuum the fallen pine needles almost everyday and we had to put water ALL THE TIME too, but it was really beautiful.

Elijah was better with Santa Claus this year, he did not smile but it was a tad better than last year's picture :)

(left picture) 2011 with Santa Claus (right picture) 2010 with Santa Claus

The past year had it's ups and downs but the good times still outnumbered the more challenging times. We are grateful for all of you, our loving family , friends and blog friends for being there with us always, throughout this journey. Thank you loving and praying for our son. Happy New Year, may we all have a HEALTHY, prosperous and blessed year ahead of us.

Excited for the year ahead :) Be kind 2012, please be kind :)

random tuesday

2012-01-03T21:23:00.000-08:00

Elijah now has a diet restriction. He can't have gluten. His test did not show true positive for Celiac Disease but because of his blood test and symptoms, his new G.I thought it would be beneficial for him to be on a gluten free diet, which means he can't have wheat,barley and rye.That is not good because Elijah looooves bread,cakes,cookies and crackers. My heart is heavy with the thought that he can't have those sweet treats, those are his little joys. I hate that we have another diagnosis to add to an already long record. I have been in a funk because of this but I am slowly snapping out of it. I love baking and I am rather good at it, and by george, I will bake my son tasty, gluten free treats because this mama will not let a simple diagnosis (sarcasm) take away from my son everything he loves to eat... and thank God for all the gluten free food selections from Whole foods and Traders Joe's... okay enough of my drama.

He is now gluten free for almost 10 days. which basically means he is not eating much.. actually close to nothing, except a few bites here and there. good thing he still loves pediasure. He can sense and taste the difference and he is still adjusting, his dietician said to give him time so I will not worry-- for now. Here is hoping that he will eat better real soon.

We are going to age out of Early Intervention next month when he turns 3. I don't think he is ready for preschool yet, but he needs to be in a contained and controlled environment to learn. We noticed he listens more to his teachers/therapists than with me. I would love to teach him the basic stuff. He already knows his alphabets, shapes and now we are working on his colors and numbers, his poor eyesight is getting in the way so I will discuss that with the eye doctor on his next appointment.

I decided to right down our goals for this year. These are what we hope will happen for 2012

for his heart to be always strong and healthy.

for physical therapy:
-longer endurance
-going up and down the stairs in upright position all by himself
-walking long distances
-jumping and running

for feeding :
- that he will not rely 70% on pediasure for his nutrition
-that he can tolerate bigger amounts of food
-that he will welcome a wider variety of foods, different texture
- that he can feed himself with real intent of eating and not just playing

for speech:
-that his vocabulary will really start to take off. I can't wait for him to be really talkative :)

for socialization :
-that he will enjoy playing and being with little kids as much as he enjoys the adult company.

but most importantly, we hope for Elijah to be as healthy as possible.

I figure it would be nice to write down our goals for Elijah so that we have a checklist. but really, as long as he is happy and thriving, we can't ask for anything more.

2011-12-25T01:26:00.001-08:00

The best of all gifts around any Christmas tree, the presence of a happy family all wrapped up in each other :)
Merry Christmas with love, the Espinas

2011-12-21T22:24:00.000-08:00

So I am waaaaaaay behind in updating our blog :( not good, not good at all since my goal is to document everything for Elijah.

We have been very busy with doctor appointments, therapies and a procedure. Elijah had an endoscopy along with biopsy of his stomach and small intestine. His G.I thinks he may be allergic to something and that he may need to be in a special diet. This is because his weight gain is very very slooooow. He drinks 2-3 bottles of pediasure plus 3 full meals a day and still just BARELY gaining weight.. The doctors are thinking, he may be having some issues with absorption of the nutrients. The results are still pending although initially we were told that it may be that he has Celiac disease or it may just be one of the many side effects of his medications..
I am okay with him being on a special diet, IF that is what it takes for him to feel better and get stronger.. Haaaaay, I wish we will have an answer before Christmas, it's hard to be festive and merry when you are waiting for a diagnosis.

2nd Heart Anniversary

2011-10-20T22:14:00.000-07:00

10-15-2011 2nd heart transplant anniversary.

We woke up early and bought balloons. Elijah was very taken with the white one.

We said a prayer of thanks. It was gratifying and humbling at the same time. It was very special.

Dear donor angel baby, We love you and we greatly appreciate the choice that your family made. We are forever grateful. We thank you for blessing our lives. We promise to raise Elijah worthy of your special gift.
We love you, you will always be a part of our family, forever appreciated and never forgotten.

We take comfort in knowing that you are in heaven. Fly high our angel

October

2011-10-04T20:48:00.000-07:00

Elijah's first apple picking experience

I love fall. I love the changing color of the leaves, I love that the air is chilly but not too cold. I love baking apple pie from scratch, the list goes on and on.
Fall is my cue to start anticipating all the holidays :) and while October 15 is considered to be the sweetest day, for our family it is actually MORE than that. On October 15, we will celebrate Elijah's 2nd heart transplant anniversary.He is our miracle.

2 YEARS! wow, we are humbled, in awe and forever grateful. Elijah is our constant reminder of God's Faithfulness.

He says, "Be still and know that I am God" Psalm 46:10

Happy Birthday EJ =)

2011-08-29T19:38:00.000-07:00

Happy birthday to my dear husband Ej =) Elijah and I are very blessed to have you. Thank you for everything that you do, for being a hard worker, for being a very hands on father to Elijah, for making sure that he has the best (health)care possible. I can't imagine going through this journey without you. You are everything I prayed and hoped for in a life partner. We love you very much. Cheers to a lifetime of hope and happiness.

simple breakfast of homemade banana bread to start the special day =)

our family wish "to spend a lifetime of birthdays together"

2011-08-26T21:14:00.000-07:00

The weather is getting cooler already. I love it :) Elijah can stay longer outside. We converted the terrace into a play area for him, hopefully, we will have a longer fall season.

before

after

more play area for our big boy =)

=)

2011-08-25T16:34:00.000-07:00

Mister guy is enjoying being at home and owie-free =)

Biopsy Day and Results

2011-08-17T17:31:00.000-07:00

Elijah was the first case of the day which meant little sleep for our big boy. He was not very happy about that but he didn't make a fuss also. We got in the hospital 10 minutes earlier than our "call time", we spent the extra time looking at the paintings of some of the patients. Elijah was very excited and happy to look at the picture of a rainbow, his favorite at the moment :)

The pre-op was easy, there were no tears. I requested the staff to do all the blood draw before the biopsy so that he'd be under anesthesia and they agreed.
They gave Elijah versed that made Elijah a happy and relaxed baby, he didn't fight the nurse when it was time to go, he was so cute and kept saying HI to everybody. The procedure itself was relatively short, there were no surprises, pressures were all good. The sedated echo and EKG made it longer, the echo was a full work up and took almost an hour.

We were told that the results would take at least 24 hours. It was very nerve wracking to wait for the call.The wait was definitely worth it, for the 3rd time in a row, it is still ZERO REJECTION for our big boy, his pressures were all good, there was no need to do any stenting or "ballooning". It was as "routine" as possible.

We are very thankful for all the prayers said for Elijah. Thank you for all the kind words and love. On a difficult day, we felt so carried by all your prayers.

Ask and you will receive, that your joy may be complete - John 16:24

2011-08-14T21:16:00.000-07:00

Sometimes I get weak. The reality of Elijah's condition scares me, I get overwhelm and panic takes over. This usually happens when we have a procedure coming up. Even after 3 years of living our "new normal" I am still not used to it.It is hard to put my game face on when there are too many unknowns. I get sad, angry, scared, anxious and all other emotions I would rather not have. I get sad because I know my baby will be in pain, I am angry because I can't do anything about it, I'm scared for the outcome but most of all, I am hopeful that tuesday's biopsy will give us a good result.

On tuesday, we will hand over our baby boy for his 5th heart catherization, a relatively "easy" procedure especially after a complete heart transplant but then again, it never gets any easier. I pray that he will not get too scared, I pray he will not fight his "loopy" medicines so he will be relax when they come and get him from us, I pray that I can hold myself together so Elijah will not see his mama cry.I don't want him to be more afraid than he for sure will be.

This heart cath for some reason is harder on me, this one is "unscheduled", he just had one last march, his next one was supposed to be march 2012.

I have been a mess the past few days. Sometimes I cry for just a minute, Sometimes I cry the whole night, but it always end the same. I stop crying and pick myself up then I am strong because I have to be, not for myself but for my Elijah.

Would you all please lift our little braveheart in prayers on tuesday. Please pray that his heart is NOT showing any signs of rejection, that all those sickness he's had were just simple childhood sickness and NOT symptoms of anything more serious.

My Grace is sufficient for you, for my power is made perfect in weakness - 2Corinthians 12:9

We are still here =)

2011-07-01T20:05:00.000-07:00

I am getting very bad in blogging :( but in my defense, It is really hard to keep up with Elijah.. ;)

We are still very busy with therapies and doctor appointments. It is exciting to see Elijah's progress. He is talking more clearly now, still not in complete sentences but we will get there soon.Physically, he is getting stronger too, he can now walk longer distances. While he may always have delays compare to kids his age, we are still very thankful that he is here with us, happy and healthy.

We moved into a new place last May. It is sad not to be around my sister's family 24/7. My ate and her family opened their home for us for the past 2 1/2 years. It was a such a big big HELP.It afforded us to just focused on Elijah and to get him better and stronger. We miss all of them, good thing we are practically neighbors just a 5-8 minute drive =) depending on traffic.

I may have not blogged but I took tons and tons of photos and videos, and one of these days, I will tackle that as well =)

Results

2011-03-18T16:34:00.000-07:00

This is a looooong and tiring day for all of us, most especially for Elijah. We are still in the hospital. The doctor wanted us to stay at least overnight for observation.

One of Elijah's old collateral vein got bigger so that was coiled off, also they opened an artery through " ballooning".

But we are thankful because this afternoon we got the answer that we have been praying for : ZERO REJECTION!!!!!

God is good all the time :)

biopsy

2011-03-16T21:05:00.000-07:00

Elijah will have his annual biopsy this friday. I am scared and nervous and anxious to know the results. Please pray for our big boy.

I know in my heart, my son will be okay. My prayers and hopes are more powerful than my fears and doubts.

He gives strength to the weary and increases the power of the weak - Isaiah 40:29

Happy Birthday Elijah

2011-02-10T08:57:00.000-08:00

Dear Elijah,

Today you are 2 years old. Such a big boy already, but you will always be mama and papa's baby boy.

These has been 2 incredible and amazing years and it is because of you. Thank you Elijah for changing us to be better.We now look at life in a whole new way. Every moment with you is a gift. The past 2 years is nothing short of a miracle, I am in awe of how you are touching the hearts of so many people around you.
Walking with you through the hard times — two open heart surgeries, one complete heart transplant, three cardiac catheterizations,one biopsy, numerous nights in the hospital, NG tubes, countless appointments — has been a privilege. Walking with you through the good times — first steps, first words, discharge days, family prayer time, reading books, morning snuggles, all day playtime, eating outs, family parties, Church time — we count as miraculous.

Thank you for being such a fighter, a warrior, you did more than what we could ever asked of you. You are our hero.

Happy Birthday Elijah. We love you more than words can say.

Always,
Mama and Papa

"For I know the plans I have for you" declares the Lord "plans to prosper you and not to harm you, plans to give you hope and a future" -Jeremiah 29:11

CHD AWARENESS WEEK

2011-02-07T22:54:00.000-08:00

We learned of Elijah's heart defect, 5 hours after he was born. The nurse in the baby nursery noticed his skin changing into a "dusky tone" and even with oxygen support, it did not go away. She had to call the neonatologist.

We are very fortunate. There are other heart babies whose defects went unnoticed, they got to go home and by the time their parents rushed them back to the hospital,its too late already. I am and will be forever grateful to nurse Ingrid who did not take a chance and called the doctor, she told me before discharge that initially she thought it was just newborn heart murmur but that she wanted to be sure, because of her, Elijah was given meds to keep his PDA open and was transported to the Childrens hospital right away.

It is sad that there is a need for Childrens hospitals, children and illnesses are not a right mix, it is not normal and it is not just supposed to go together, but having said that, we are very thankful for all the medical professionals who work in childrens hospitals. I imagine it is hard seeing babies and children sick, our doctors, nurses, respiratory therapists, phlebotomists and all other special people working with sick children and their families are all heroes. We are very thankful for their compassion, their bedside manner, the world is really a better place because of people like them who see their work as a "calling".
We are thankful for our "hospital family", who truly cares for our son.
Having a sick child is very hard, even on good days, our worries and fears are not far behind, knowing that we have a great team working with us makes it a lot easier.

FEB 7-14 CHD AWARENESS WEEK

2011-02-06T22:59:00.000-08:00

What is a CHD???

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held him, I'd waited so long,
It's knowing that I need to help him grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do his nails look blue?
It's cringing inside at what he's been through.
It's dozens of call to his pediatrician
She knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over, I'm still not prepared,
It's knowing that his heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that he'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching him chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little boy who loves Thomas the train,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.
This is...a CHD.

**Written by Stephanie Husted (fellow heart mom)

we are still here =)

2011-01-31T09:32:00.000-08:00

Time is going by so fast.. Its almost february, a very special month for our family. CHD ( Congenital Heart Defects) Awareness week is Feb.7-14.I hope to post everyday for that week and do my part in raising awareness and our braveheart's birthday is on February 10... Elijah will be 2 years old already =)
I am very excited, we will have a Mickey Mouse theme party and aside from his birthday cake, everything will be homemade. All the party food and decors. I am enjoying the preparations and I hope he will have a good time on his party too.
I am seeing little burst of naughtiness from time to time, we are after all officially entering the terrible twos but for the most part he is still the same smiley, laid back and snuggly little boy.

2010-12-24T12:11:00.000-08:00

Wishing all of you the Wonder, the Glory, and the Miracle of this Holy Season. Have a Blessed Christmas

Merry Christmas!

2010-12-22T05:29:00.000-08:00

Personalize funny videos and birthday eCards at JibJab!

2010-12-09T09:07:00.000-08:00

I have found the one whom my soul loves -

Song of Solomon 3:4

Happy Anniversary to us honey =) I am thankful that we are partners in this journey.

I can't imagine anyone I rather share my life with than you..

Only you ..forever and always. I love you EJ.. =)

Fly high Steve

2010-11-29T16:22:00.000-08:00

Steve Catoe of Adventures of a funky heart passed away. He was a great advocate for CHD(congenital heart defects) and for all heart mothers, he was a hero.

I first came across his blog while researching "oldest"and "adult" survivors of CHD. I needed to know that there are adult survivors. I desperately wanted to know that people not only survive CHD but that they would have a good quality of life. It was pure joy and relief when I learned about him. He was a ray of sunshine during that dark time. He gave me so much hope for the future.He touched the lives of so many heart families and made a big impact in bringing awareness to CHD. I hope and pray that my son would be like him one day.

His "funky" heart is now perfect. Thank you Steve for all that you have done for the heart community. You will never be forgotten. We will keep up the fight against CHD.

Rest in Eternal Peace.

And I wonder how long this race is. The longer the better, and if I can help it, I’m not going to go down on the course.

I hope to cross the finish line standing. - Steve Catoe

Happy (late) Thanksgiving

2010-11-26T20:43:00.001-08:00

The most I am thankful for - My braveheart

2010-11-24T22:45:00.000-08:00

Today (Nov.24) I turn 29 =) so happy happy birthday to me.

"The journey in between what you once were and who you are now becoming is where the dance of life really takes place."

I am grateful that even with the ups and downs, I find that I still can dance..

Halloween 2010

2010-10-31T18:44:00.001-07:00

trick or treat =)

Happy Halloween from the Espinas =)

transplant anniversary

2010-10-19T22:33:00.000-07:00

It does not really feel like it has been a year already. The memory of that special day is still so vivid, it seems like it just happened recently.

and yet it is here. It really has been a year (and a few days) and we celebrated and still are celebrating Elijah's first heart transplant anniversary.

We could not be more grateful.

the morning of the transplant day. Nothing can really prepare you to be mentally and emotionally ready on the fact that your baby will undergo a very invasive procedure.

one year ago, this is what I could not take my eyes off, my sweet baby, watching the monitors, watching different numbers and levels, learning every meds, learning every pumps, trying hard to understand what each line was for. looking at this picture is very hard, it is in a folder that I don't open regularly but it is part of our journey and makes where we are now so much more wonderful.

"welcome home" with the promise of a new beginning and a second chance.

We were told repeatedly that transplant is not a fix, we know and accept that it is not, that is why we are so thankful that our braveheart is doing good. each day with him is a gift, a true blessing.

he is our super hero, he has taught us so much more in the last 20 months than what I could ever hope to teach him.

Happy heart anniversary son. We are so proud to be your mama and papa, because of you, our marriage is stronger, our love is greater and most especially our faith in God is deeper.

Keep on fighting baby.

With all our love,

mama and papa

picture wednesday

2010-10-19T22:30:00.000-07:00

our reason for smiling

2010-10-15T21:07:00.000-07:00

We celebrated this special day with the early morning mass, to give praise and thanks for our baby's miraculous second chance.

In the evening, we had a simple dinner with our family living nearby.

The very same people who last year waited with us anxiously for the hourly updates in that small family room just outside the OR. The mood tonight was very different from last year but one thing remains the same--there was that atmosphere of love.

My emotions are still very high, I will share them with you as soon as I am able, for now I would like to share a moment of peace and silence in honor of our donor family.

Our dear donor angel baby,

please hug your mommy and daddy extra tight tonight, I imagine today is bittersweet for them. Please give them an extra kiss or two.

We all love you.

mama hazel ,papa ej and Elijah

10.15.2010 First Heart Transplant Anniversary

2010-10-15T03:12:00.000-07:00

our super hero

Today is the first heart transplant anniversary of our little braveheart. Please lift us and our donor family in prayers as we commemorate this most special day.

In the early morning of October 15, 2009, just 36 hours after being put officially on the waiting list of UNOS (United network for Organ Sharing) we received the call-- a healthy heart for our baby.

We were very happy, grateful and humbled, the very same emotions we carry with us everyday ever since.

I knew there was a chance that it could be the last day I will see my baby alive, but although I was nervous, I was at peace, there was an overwhelming sense of calm deep within. I knew that Elijah will be okay.

The gift of life that my son received last year not only saved him, it saved me, it saved our whole family.

Happy Heart Anniversary Rockstar..many many more to come. We love you very much.

10.10.10

2010-10-10T22:49:00.000-07:00

This same day last year, October 10, on his 8th month birthday, we were told that "our baby only had 10% chance of making it to his first birthday.

Today is Elijah's 20th month birthday.. I can't believe he is 20 months already..

Today at mass, the first reading was from the book of Elijah.. For the first time ever since we started taking him to attend the Holy Mass, our big boy felt confident enough to wander and walk away from us. He was all smile..very happy.Seeing him that way made me cry, I hoped I was discreet, it was kind of embarrassing but I couldn't help myself. Sometimes, he literally takes my breath away. I am so happy that he is here with us, I am sad for all the pain that he had gone through and will still face in the future but mostly I am proud that his life is a story of love and hope.

heart broken

2010-10-06T20:15:00.000-07:00

I am down and broken. Nine passed away this week because of CHD.. 2 of them babies, whose stories I have followed closely through the blogs of their wonderful mommies.

Please take a moment to say a prayer of peace, comfort and healing for the families left behind.

This week has been tough.

It is a sad reminder of how big a monster CHD is. It is our reality. It is that tugging feeling of "what if" inside my heart even though my baby is doing good for now. It is that restless feeling because I know that it can change in a heartbeat. It is the reason why I don't sleep soundly at night because I have to get up at least twice to check on my baby-because, only by doing that gives me the comfort in the long dark night.

I hate that we still do not have a cure for this dreadful disease.We need to do more research.We need more funding to better understand this beast that is untimely taking away so many heart heroes.

CHD does not only mean one broken heart, it breaks the hearts of all family members.

FIGHT CONGENITAL HEART DEFECTS-- RAISE AWARENESS AND SPREAD HOPE!

significance of October

2010-10-05T21:40:00.000-07:00

We are approaching our baby's first heart transplant anniversary.

I wish I could put into words the emotions that I am feeling but really, I do not think I can find the right words to give justice to the gratefulness in my heart.

When we got the call that early morning of October 15, 2009 I was beyond thankful and at the same time humbled.While I was overjoyed for another chance, my heart was aching as well, I knew that somewhere another mother was saying goodbye to her child.

Our donor family not only saved Elijah, they saved me, they saved our whole family. There really is no way for me to express our gratitude, somehow "thank you" does not seem to be enough. There should be a word stronger and deeper to show thanks to all organ donors and their families.

Last October, something very special happened, our baby was given the gift of life, and we learned the ultimate kindness from our donor family. In their moment of sorrow and darkness, they chose life and made it our family's brightest moment.

From the bottom of our hearts, Thank you. Thank you so so much.

without a doubt

2010-09-15T21:47:00.000-07:00

I Still Would Have Chosen You
If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you.
If God had told me, "this soul will one day need extra care and needs" I still would have chosen you.
If He had told me, "that one day this soul may make my heart bleed" I still would have chosen you.
If He had told me, "this soul would make me question the depth of my faith" I still would have chosen you.
If He had told me, "this soul would one day make tears flow from my eyes that would overflow a river" I still would have chosen you. If He had told me, "our time spent together here on earth could be short" I still would have chosen you.
If He had told me, "this soul may one day make me witness overbearing suffering" I still would have chosen you.
If He had told me, "all that you know to be normal will drastically change" I still would have chosen you. Of course, even though I would have chosen you, I know it was God who chose me for you. Thank you God for letting me be his mommy! ~Author Unknown

Cardiology Update

2010-09-09T20:58:00.000-07:00

Today we had our heart transplant clinic. I was very nervous the night before, I hardly slept. It has been awhile since we had a full work up done, I was very anxious especially because we learned that he has a slight co-arc and the left side was a little enlarged during the last clinic.

We came prepared, toys don't cut it anymore so we brought all the things he loves but should not be playing with, like his papa's playstation controller =)

He was poked twice to get all the required amount of blood for labs---

lab results are all normal, perfect and within the target range. Thank you Lord.

EKG was a little hard because he would not stay still but the reading we had was also normal.

ECHO was the biggest surprise, our tech was really good and fast, she got all the pictures that they needed and then some.. Elijah was such a good boy just playing with a spoon and watching his beloved Mickey Mouse Clubhouse. Ej and I had a bit of a scare when the tech left the room and called in a doctor. I was almost in tears, I thought something was wrong, it turned out our little guy was such in a good mood that they were able to take pictures from an angle that was almost impossible to take from a squirmy toddler.

ECHO showed very good heart function, good squeeze and best of all, his left side is now smaller, from the words of our beloved cardiologist Dr. G, it is normalizing. Amazing! Praise be the Lord.

We were told to stop one medication--Yay!!! one less medicine =)

He lost weight but that was to be expected since he had a viral infection and then the c-diff infection almost simultaneously.

He was on the 25% for the weight and was tall at 80% for the height.

The biggest good news was that we don't have to do a biopsy on October --his 1 year heart transplant anniversary since he is doing well, they agreed to wait and do it 18 months post transplant, so that gives us another 6 months to try and beef up our lean guy.

The downside was that they made Elijah wear a holter monitor and he needs to keep it on for 24 hours, it is routine and a yearly maintenance check. Numerous wires/leads and a very active toddler is not a good mix but so far nothing is pulled out yet. He is sleeping comfortably even with all the wires, 11 more hours and my baby will be wire free. I am very thankful that Elijah is such a happy little guy. His happy disposition is making it so much easier. He was not able to play with his constant playmate and cousin Cheska today because that little girl loves all things electronic =)

Overall, It was a very good visit. minimal crying fits and good results.We are very grateful and Blessed.

It is almost weekend.. Happy weekend everyone.

much love,

The Espina Family

2010-09-06T22:48:00.000-07:00

wishing for many more birthday celebrations together as a family

Happy 31st birthday to my husband... ( a couple of weeks late in posting)

Thank you for being so strong, for lifting me up in all ways possible, for doing everything for our family.

We love you so much. Elijah and I are very lucky to have you as the head of our little family.

2010-09-02T22:42:00.000-07:00

♥In Honor of My Donor Family♥
by Karol Franks

I received a gift, on a jet it flew
It came from someone I never knew.

It came with no card, ribbon or bows
But sent to me that’s all I know.

It didn’t arrive in a box or sack
And is a gift one would never send back.

The gift in size is rather small
Compared to its power to conquer all.

You’ll never hold this gift in your hand
It’s given to people throughout the land...

This beautiful gift has set me free
What a precious gift and given to me.

This gift was given out of selfless love
And delivered to me with help from above.

These gifts are so priceless, valuable and few
When you know of this gift, you will agree too.

With this gift I can hold my head high
To dream the impossible and reach for the sky.

This gift has taught me to scream and shout
Now let me tell you what this gift is about.

This gift will not be taken in strife
The gift I speak of is that of life.

The gift of life handed me a key
It opened doors and set me free.

Organs aren’t needed at your final destination
Leave them on Earth without hesitation.

Every human will someday be called to come home
Your organs may stay and continue to roam.

No need for organs in the heavens above
Leave them on Earth for others to live & love.

Now that all has been said and done
Please donate your organs and give life to one.

Let’s spread the news let’s scream and shout
Organ donation is what it’s all about

2010-08-19T09:29:00.000-07:00

HEARTthrob : sweetHEART : braveHEART

2010-08-14T21:43:00.000-07:00

This is where we were last year. Reading that post was hard, it brought about a lot of memories. It was difficult, painful and draining. I remember all those emotions, I don't forget. I never want to forget, those times are part of our journey.

Today at mass, Elijah and I had to stepped out, he was babbling and was trying to talk louder than the priest. We went out to have dinner and he ate all of his papa's salmon bento box-- yes he loves Japanese food. I had no idea! It was a pleasant surprise. Then when we came home, he walked all over his playard without any of us telling him to. It was real walking not just the 5-6 steps that he has been doing for the past months. It was real purposeful walk, he can stop himself from falling, he is now more precise, more confident.

What a difference, a year can make. I am in awe.

Thank you Lord, for healing our baby, thank you donor family for this second chance with our son.

Good job Elijah. We love you so much.

blog anniversary-- 1 year

2010-07-18T19:48:00.000-07:00

Our humble blog is one year old already. I posted my first entry, July 17,2009..

As I went through the blog, I have experienced all kinds of emotions, sad, happy, broken, elated, hopeful.

When I first learned of the severity of my son's condition, I shut down, I did not want to talk about it. Part of me foolishly hoped and believed that if I didn't talk about it that it will go away.

Then I sent an email to our close family and friends, answering individual emails was very hard especially when you were practically living in the ICU. I realized sharing about our family's heart journey is not only easier but also very therapeutic.

Thank you for sharing this journey with us, we deeply appreciate your love, kind words and prayers.

heart hugs,

hazel,ej and Elijah

2010-07-15T23:28:00.000-07:00

GQ model --- baby boy edition =)

catching up with pictures

2010-07-14T21:31:00.000-07:00

On the way to downtown

Celebrating Fathers' Day.. a superman cake for a super papa

very happy to be out and about..

attending family events

the senior and his junior

I realized that I don't blog as often as I would like, I want this to be an online diary for Elijah, for him to see what he's been through, both the good and the bad..

If I can't write a post, I will just put pictures.

I also noticed that I blog more regularly whenever something not so good happens, I want to change all that. I want him to remember not just the owies or the hospital stays, I want him to remember all the fun stuff as well..

home sweet home

2010-07-12T14:54:00.000-07:00

We are home... =)

Elijah is happy and playing. We have to give him as much liquid as we can. We are still waiting for the blood culture but all seems okay.

As with any viral infection, we can't do much about it but just wait for it to pass, it is just much tougher on our little brave guy because of him being immuno-suppresed.

Plan of action is to see his pediatrician one week from now and go back to cardiology on September.

Here is to hoping for a sick and stress free summer ahead of us.

feeling better

2010-07-12T08:23:00.000-07:00

feeling a little better but still in the hospital =(

Elijah drank 12oz of pedialyte all throughout the night, no spit ups, no throwing up. He is no longer on IV liquids but still has the IV on.

We are still waiting for the lab results.

praying that we will get to go home real soon.

hospital stay =(

2010-07-12T00:09:00.000-07:00

Well I guess the inevitable happened... we got admitted in Childrens Memorial. This is our first admittance since getting the heart transplant last October.

July 11, Our whole family went to Church, Elijah was doing fine and everything was okay at around 1130 am while playing he just suddenly vomited, projectile vomiting. I freaked out a little because his last meal was given at 8:30am, he was happy and fine afterwards, acted like it was nothing. At around 12-1230 I gave him his lunch, nothing extraordinary but after the last spoonful, it all went out again . He did not fuss or anything so Ej and I decided to let him rest, he slept for 2 hours and when he woke up he was just given jello and after 30 minutes, he threw up. The third time got us very scared..scared enough to run to the ER.

We stayed for over 6 hours in the ER, they took vitals, chest XRAY, an IV was placed in, drew blood/labs and attempted to take an EKG.. It was the longest attempt in getting the EKG, the nurse took forever to attached the lead and wires and forgot to put in her ID number so our good reading was not recorded, seriously?!?!?! I was beyond frustrated!!

It is now 2:20 am here, July 12, both my boys are asleep from exhaustion.. As is the norm whenever we are in the hospital, I can't sleep. I can't make myself fall asleep. I would rather watch my baby sleep, pat him, stroke his hair, anything to make him comfortable. Tomorrow or should I say later, we will once again draw blood, hoping that we will get all that is needed in one try, praying that everything will be okay..

I have to go now, my baby is crying and is in need of some cuddling time.

Fathers' day

2010-06-20T21:01:00.000-07:00

Our little rockstar gave his papa a great gift today--- he decided to walk 4-5 steps unassisted, on his own, without prodding from us (ahem - me) towards his papa... Yay!!!!

*****************

I wish I could share to everyone how amazing a father my hubby is, but since he does not like it when I get all mushy especially when we are talking about him--I will refrain.. It is HIS special day after all..

but I can't help myself, so maybe I will post something, a little something =)

Thank you honey for everything that you do, I could not ask for a better partner in this journey. I love you so much.

Happy Fathers day..

and to my own papa, thank you so much for everything that you've been, you are one of the greatest dad =) we love you..

and to my father in law, we miss you popsie.. see you soon, we love you. =)

Happy Fathers Day

Cardiology update

2010-06-15T19:10:00.000-07:00

Last thursday we had Elijah's routine transplant clinic. We had lab draws, ekg, echo -- all the works..

The lad showed that his WBC is on the low end, the nurse practitioner said, it is because of his persistent on and off cough. His prograf level (anti rejection medication level in blood ) is NOT where they want it to be. This is quite a shocked because we had his level stabilized already.. It is not a big setback but it means that Elijah will have more frequent blood draws =(

EKG is normal.

The echo showed good heart function. (Praise be to God) . The cardiologist said there is a little coarctation in his aorta, it is where the surgeons connected his new heart and part of his old heart so it is somewhat normal for heart transplant patients.. It is another thing that we will look out for.

Overall it was an okay visit. We are sad that Elijah will once again have frequent blood draws, but we are looking at the bigger picture, his heart is doing well, he is healthy and most importantly he is happy.

Next transplant clinic is 3 months away. I will try hard and do my best not to worry about the slight coarctation and/or about the prograf level being once again out of whack.

We will enjoy the summer. I will make sure Elijah will have loads of fun-- he deserves nothing less. Family from both sides will come and visit us, those from my side will see our braveheart for the first time..Happy and fun times ahead.

The Chosen Mothers

2010-05-08T08:33:00.000-07:00

The Chosen Mothers

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with an illness." The angel is curious. "Why this one God? She's so happy."

"Exactly" smiles God, "Could I give a child with an illness to a mother who does not know laughter? That would be cruel."
"But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world an that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

******

The path that God has chosen for me as a mother is different from the path that I would choose for myself. To say that I will not change a thing is a lie.. I wish for my baby to not go through so much pain. I wish my baby a life not riddled with many unknowns.

Being a mother is hard. Being a mother to a child with a serious illness is doubly hard.
They say it takes a village to raise a child.. I am thankful for all those members of my "village" especially all the mothers.

my mama for showing me how it is to be a mom.. for loving us, for praying for our family especially for our son. for holding me steady when my heart was full of anger and sadness. for taking good care of me especially during the times I couldn't do it on my own.

my mother in law for all the love, support , care and most especially for raising my husband EJ, to be the father and husband that he is now.

my grandmother, my nanay for always praying for us and for reminding me of God's love and infinite power.

my sisters who are mommy vi, mommy honey, mommy aizza and mommy sigs to my baby boy.
thank you for loving my son as if he is truly your own..

HAPPY MOTHERS DAY.

This is my second year to celebrate this special occasion. I am very grateful and humbled.

Thank you son for being a fighter... Celebrating mothers day this year is another victory for us.. Being your mama is truly a priceless gift.

I love you very much.

with all my heart
mama

a heartfelt plea

2010-04-29T08:53:00.000-07:00

We are humbly asking for your support to help this little girl and her family. She badly needs to have her life saving operation.. Every centavo counts.. Her operation will be in our home country, Philippines, the cost is less than $2,000 (php 83,000.00)
Readers who want to contribute can call RUTH at 639103193946 or donate in their savings account with RCBC 1109940395.

Please help us in helping Carmela and her family in their fight against heart disease..

Let us spread awareness and raise HOPE.

welcome home

2010-04-25T19:07:00.000-07:00

My dearest baby,

One year ago today, you, papa and I had our first car ride as a family. Last year on this day, we were able to finally take you home. You were 2 months and 15 days old.

I remember crying happy tears as I dressed you on your blue and white striped onesie and your red shoe-socks. It was the same outfit I lovingly prepared for you to wear going home , weeks before you were born.

Mama left the hospital where I gave birth to you without you baby, just a diaper bag with all your things. I was very sad because it was not you in my arms. I held on to the hope that one day, we will get to bring you home with us.

That onesie was my "hope" reminder. It was in your ICU room all throughout your stay in the hospital. When things would go bad, I would look into that onesie, imagining you wearing it on our way home.

2 days before the discharge, you had one last hurdle. You did not do so well,because you cried the whole duration of your car seat stimulation test. Your doctors, therapists and nurses were all anxious because you were not supposed to cry for a long time. The hospital was 20 miles away from our house, papa and I were very worried.

On the day of your discharge, Papa and I were very happy and scared. Scared because we did not know if we will be good enough to give you the care that you needed but mostly we were happy, very happy to be a family together under one roof.

The nurse manager was the one who walked with us out of your room and into the waiting car. All through the way out, you were crying, I think she was worried, she kept telling me to call them should you change color or if "anything" happens.
It took a lot of time to load all your things, you were hooked up on oxygen, a feeding tube and a small machine that would tell us if your oxygen level is stable. I kept on looking at the monitor but when papa started to drive, you immediately stopped crying. I wanted to believe that it was your way of telling us that everything will be okay. That moment validated what I already knew-- that our tremendous love for you will make it all easier.
Baby, when you stopped crying, you gave your papa and I the confidence that we can be the kind of parents that you need. We made a promise then, that we will do everything so that you will have the kind of life that you deserve.
I pray everyday that papa and I will always have the strength and wisdom to know what you need and want and be able to provide all that for you.

We love you so much baby. We are very sorry that you had a very rough start. Thank you for being so strong.

Welcome home baby, now and forever.

with all our love,

mama and papa

6th month post transplant

2010-04-15T20:10:00.001-07:00

6 months ago today we received a special gift, an angel heart for our then very sick baby whose own heart was barely beating.

We were told that the first 6 months would be the hardest, it will be full of ups and downs, the possibility of rejection is very high, we are very thankful that he is doing very well, and aside from one trip to the E.R , it was all good.

Some ask why I don't celebrate monthly the day my son was given a new heart like I do with his monthly birthdays.
There is not one day that I don't think about my son's angel heart but every 15th of the month, I get extra emotional. I am very thankful and grateful for this second chance with him but it is just hard to "celebrate" when there is a family grieving and commemorating the loss of their baby on the same day. It makes me really sad to know that one of our brightest moment is one family's darkest and I pray that everyday it gets easier for them.

A mother of an organ donor said, it gives them comfort to know that their child will live on through another and for me to know that that is how they see it is truly a blessing.
So today, we celebrate a miracle because of a great act of love and generosity.

Thank you God for making it all happen.

sorry.....

2010-03-27T09:56:00.001-07:00

I am very bad at blogging lately. I am sorry. My little baby is turning into a toddler and it is hard to keep up with him. Gone are the days wherein he would play on the floor and I can update the blog.. He is a big mover..it is amazing.

Last year, this same week, he was very unstable, on the CPAP machine and could not hold his oxygen sats up... what a difference. Thank you God.

Big boy still can't walk on his own but he is good at cruising, as long as you are holding his hands or there is a furniture or a toy to hold on to, he will walk-- and he will walk fast.

Now for the updates...

We just had a neurology appointment wherein everybody were glad to see our rockstar. The last time that neurology saw him was during the evaluation for the transplant and he was a very very sick boy then. They were very happy with his progress. good job baby!!!

It has been two weeks since we got rid of the NG tube. Elijah is now drinking his liquids and taking his many medications like a champ..

We still have to consult with his pediatrician and nutritionist to make sure that he will not fall out of his weight curve chart, so far we are doing good, please pray with us that we don't have to go back to the tube ever again.

When we know for sure that the weaning off from the Ngt is successful, I will share here in this blog how we got rid of it.

Thank you for still dropping by to check on our rockstar...

GOOD NEWS

2010-03-06T08:32:00.000-08:00

Last thursday, March 4, our baby had his first biopsy to check for any form of rejection of his angel heart..
and the result is....

ZERO REJECTION!!!!

and it gets even better.... our next cardiology clinic is 3 months from now and his next blood draw is on 6 weeks..
3 months?!?! 6 weeks?!?!?! for us, that is like a lifetime away from now. We are so used to going back and forth to and from the hospital.. twice a week for blood draws and once a week for clinic... I am soo happy that my baby will get a break from all the owies...
and then the transplant nurse practitioner said : "should you have any concerns, you can consult your pediatrician first, no need to call cardiology right away... what?!?!?! pediatrician!! normal baby stuff-- at last!!!
Thank you Lord.... Thank you everyone for praying with us...

Spring time is coming.... We can't wait for walks in the park, barbeque party, and all the good stuff that we missed out on last year. I can't wait for my baby to experience it all...

God is good..... all the time

2010-02-18T21:07:00.000-08:00

Last year, our then 8 day old son underwent his first open heart surgery, the Norwood procedure. The Norwood procedure is a very invasive and high risk surgery.

Up to now, I still have no words to describe the anguish and sadness we felt on that day. I remember feeling so helpless as the O.R nurses came in to take him. Monitors were beeping, so many sounds as they were preparing to wheel him out of the NICU (neo natal intensive care unit ) and into the operating room. I just wanted to make them all stop, I desperately wanted to take my baby and ran away. As a mother, all I ever wanted was to protect my baby, but I had to let them. Without the norwood procedure, my baby will not live.

Pam, one of the NICU nurses who took care of Elijah hugged my husband and I before we left the NICU. I saw some tears in her eyes, she told me, someday Elijah will be okay and you would have a hard time keeping up with him..I hugged her tight again after those words, days before, we were busy signing consent papers, nurses and doctors explaining to us the severity of our son's conditions, the risks of the operation, the side effects. Pam's words were a much needed break from all the bleak and doom scenario. My husband and I needed those words especially during that moment.

Today, my husband and my papa assembled Elijah's fenced in playard. He is becoming quite the little rascal, moving a lot and getting into places that my fort of pillows and comforters can no longer hold him..
It is happening already.. We are now really having a hard time keeping up with him..

The Day I Became a Heart Mother

2010-02-11T19:39:00.000-08:00

One year ago today, our baby, only 5 hours old were taken from us and was transported to the Childrens Hospital. It was a very scary time.

I did not sleep very well last night. I kept on thinking about the events that happened after his birth. The pain is still here, I am sure I will never forget this feeling, I just don't think I can.
I held my baby all throughout the night, he slept on my chest... I am grateful that he is doing well and I pray hard always, that he will never be taken away from us... ever again..

When I Became a Heart Mother

Oneday my world came crashing down,
I'll never be the same.
They told me that my child was sick
I thought, am I to blame?
I don't think I can handle this
I'm really not that strong
It seemed my heart was breaking
As, I'd loved him for so long.
I will not give up on this child
despite your best "advice"
I will give my child a chance
No matter what the price
And I will learn all that I need
to help my child to thrive.
I'll even use that feeding tube
My child will survive!
Will he require therapy?
What if he can't gain weight?
Alright God I can do this
I will not curse our fate.
The feeding pump beeps,( at 3:00 a.m.)
It serves as my reminder
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.
Another angel earns their wings
and I run to my sleeping child's bed
I watch him then, for quite awhile
(Bend down and kiss his head)
Then I cry for the parent's whose lives have been broken
And I look to God wondering why?
Oh Lord, I just can't know your ways
No matter how I try
And yet, I trust You hold his life
(and guide us through each day)
My mind says savor each moment he's here
But my heart whispers,"Please let him stay"
From pacing the surgical waiting room
to sitting by his hospital bed
From.wishing for a good nights sleep
to learning every med
From wondering will he be alright
to watching him reach out his hands
with every smile, my heart just melt
despite life's harsh demands
For all who see that faded line
I look to them and smile
You see my child is loved so much
I would face any trial
That same scar I trace with my finger
It's the door to his beautiful heart
I never guessed how much I'd love him
Just as YOU loved him right from the start
A heart mom is always a heart mom
Now wise beyond her years
And for those who have angels in heaven
Our hearts share in all of your tears
Everyday I will strive to remember
You chose me for him and no other
And I will embrace that beautiful day
When I became a "heart mother".

~Stephanie Husted

Happy Birthday

2010-02-10T06:05:00.000-08:00

Happy Birthday baby, one year down.... a lifetime more to go!!!!

We love you soooooo much.

Papa and Mama

2010-02-06T09:01:00.000-08:00

Somewhere...someplace... today...

A family is waiting to hear...

Is something wrong with their baby?

The answers aren't quite clear...

This family has entered an unwanted world...

And they just don't know what to expect...

Somewhere...someplace... today

They first heard the words: heart defect.

And how they hoped this was not true...

And thought... this cannot be...

I too... know just how this feels...

For one day...this was me.

Somewhere...someplace...today...

A man and a woman embrace...

Their baby is in surgery...

They long to see his face...

They haven't got to hold him yet...

Without...a cord or line...

They pace the room awaiting news...

And hope he'll be just fine.

Prayers fill this busy waiting room...

And mom and dad are scared...

Somewhere...someplace..today...

The tiniest hearts are repaired.

Somewhere...someplace...today...

A child's growing fast...

Smiling,laughing,thriving...

His mom thinks...can this last?

It's almost easy...to forget...

That anything is wrong...

Somewhere...someplace..today...

Her child seems so strong.

Somewhere...someplace... today...

A little boy fights just to live...
A father holds his tiny hand...

His love...all he can give...

The doctor's are all baffled...

They fear that he might die...

Somewhere...someplace...today...

A family says goodbye...
Somewhere...someplace...each year..

More than 40,000 families will see...

What it means...when something's wrong...

They'll face a CHD. (congenital heart defect)

Today...for just a moment...

Stop...remember...reflect...

Make time to tell someone you know...

"I've been changed by a heart defect".

Author - Stephanie Husted

Please BE AWARE!!!

2010-02-03T07:20:00.000-08:00

We are doing "hearts" theme background in honor of ( CHD )Congenital Heart Defects awareness week- February 7-14 ..

Before Elijah, I was not aware that such world exist, I did not know that newborns can have heart disease.Most people do not give CHD a second thought, this is because of the limited exposure and awareness.

As a mother of a son born with one, if not the most challenging case of CHD, I would like to help bring more awareness.

We in the "heart community" are already aware of these facts. This is our life. We live in this situation. My hope is that our friends and family members reading this blog would be informed. Help us raise awareness and spread hope..

* CHD ( congenital heart defects ) is the # 1 birth defect and the # 1 cause of INFANT DEATH related to birth defects

* 1 in 100 babies are born with CHD
* 1 in 10 of those babies with CHD will have fatal defect like HLHS
* In the US, there are twice as many deaths due to CHD than all forms of childhood cancer combined, yet there are 5 TIMES more research funding for pediatric cancer than CHD
* In the Philippines, there are still no way for doctors to treat fatal CHD like HLHS. Many if not all babies born with fatal heart defects die and will just be diagnosed as SIDS ( sudden infant death syndrome )
* Only about 30% of children who need a heart transplant receive one in time.
* causes of CHD are still unknown. It is said that genetics and environmental factors can play a role.
* about 40,000 units of blood are used daily. Here in the U.S, every 3 seconds, someone needs a blood transfusion and most often, that someone is our children.
* with advancement in medical findings, most babies with CHD will have their first and sometimes only corrective surgery before the age of 2.

Last year, Feb 7-14 was the week that I was supposed to give birth. My baby was born Feb. 10 and 5 hours after we became a statistic.. Please be aware, we are not just a number or a percentage.. CHD is very real. I, for one did not imagine that I will have a baby with a heart defect. We have no family history of heart defects, I was only 26 when I got pregnant, young and healthy. CHD does not discriminate. Please support CHD funding, please be a blood donor, please check YES, I want to be an organ donor in your drivers license. Please help us spread the word around.

2010-01-31T20:51:00.000-08:00

4 months ago, we were told that our baby only had about 10% chance of making it to his first birthday. The doctor told us this as he was explaining the immediate need for Elijah to have a heart transplant. I was able to hold myself together during that conversation.I did not cry. I thought of my baby in the hospital bed. I did not listen to the statistics and numbers that the doctor presented to us, my mind wandered towards Elijah and just focused on him.. I thought of his face, his smell, how he feels against my chest when I carry him and as the doctor was still explaining, I was practicing mind recall. I desperately wanted to have the ability to remember everything about him because I was so afraid that our next moments together are not guaranteed. I remember feeling so down and broken, my husband was quiet, his usual "it will be alright" attitude was gone after the talk with the doctor. We just cried. I remember praying hard, asking God to please let my baby stay with me, with us..

In 10 days, Elijah will celebrate his first birthday. I cannot begin to describe how happy and excited we all are.

God is good.. All the time.

overdue updates =)

2010-01-18T20:32:00.001-08:00

We are still here.. =) happy to be home and getting stronger day by day...

We are now very busy with Physical Therapy and Speech/Feeding therapy so that Elijah can catch up with other babies/toddlers his age.

His P.T was very happy to see him progressing more and more, upon assessment, she concluded that Elijah's problem is just low muscle tone from being hospitalized almost all his life, we are very happy to learn that it is nothing major. With exercise and muscle strengthening treatments, she is confident that we can reverse that..

Our primary struggle now is the feeding, Baby boy is being a stinker and would turn on his naughty mode every feeding time. He eats and bites on everything except his formula and food. His speech therapist is confident that this is not an oral aversion ( very consistent for heart babies ) because he puts almost everything in his mouth, she believes that this is more behavioral.. With the thickener and nasty tasting medicines, Elijah became very defensive of his mouth. So far, he is not refusing yogurt which is a blessing because he needs those probiotics =)

2 days ago, we set up his walker, it made me tear up to see him trying to walk.. I am so proud of my baby. He has come so far.

I have a great feeling 2010 will be our year =) THANK YOU GOD

2009, a year in review

2010-01-01T08:20:00.001-08:00

January -- We were joyfully anticipating the birth of our firstborn, a son that would complete our family.

February-- 10: the birth of Elijah 5:50 pm. By midnight we were told that our baby was transferred to the NICU (neonatal intensive care unit ) but that everything seems to be okay

feb 11: at 3:00 am we were told that there "may" be something wrong with the heart. a pediatric cardiologist was called to assess, at 3:30 am, we were given the devastating news. It was a blur, I honestly thought I was having a very bad nightmare. We were then told, they have to transfer our baby. We asked for a chaplain to baptized our son. With just the two of us, the hospital chaplain performed the baptism in the NICU.By 5:00 am the transport team from a highly specialized childrens hospital ( 20 miles away) came to take our newborn baby.

feb 12: Even with a third degree lacerations, I was discharged a day early from the hospital where I gave birth so that I could be with my newborn baby.

feb 12 - 17 : meeting with all the specialists, surgeons, cardiologists, nurse practitioners, intensivists. We signed lots of consent papers.

feb 18: NORWOOD procedure of Elijah, the most invasive open heart surgery for newborns. I do not have the words to describe the anguish of sending my precious baby in the OR. No parent should have to feel that pain.

feb 24: Elijah had a cardiac arrest, coded and was put into ECMO

feb 26: Elijah pulled through, was taken off ECMO succesfully.

feb 28: first stage in chest closing

March : Elijah's chest was fully closed but we learned that his lungs were not strong enough to be taken off the ventilator. at march 18, after a month of being intubated, the breathing tube was taken out. Elijah endured infections, Iv burns.

April : April 25, we were discharged home. After 77 days, we finally brought our baby home from the hospital. With 5 medications round the clock, a feeding tube and oxygen.

May : Elijah spent a day in the hospital after a routine clinic visit for an observation. His pediatric cardiologist said that his heart was "enlarged". On may 16, he had his first heart catherization. We learned that he was a candidate for the 2nd stage surgery.

June: On June 15, he had his 2nd open heart surgery. We were home after 2 weeks

July: Baby boy was thriving at home. We thought, we were finally on the road to recovery. Elijah's first ever visit with his pediatrician.. finally normal baby stuff.

August : On Aug. 15, a routine cardiology clinic visit, the PC sent us immediately to the PICU. It was determined that although Elijah looks clinically okay on the outside, his heart was in severe heart failure on the inside. He was given milrinone ( IV heart medication) for 5 weeks. Elijah had his 2nd heart catherization.

September : We were discharged home after 42 days in the hospital for severe heart failure. On september 27,we went home on 15 medications and oxygen support. We were told to seek the opinion of another childrens hospital in downtown. the one with a transplant facility. They said, Elijah was doing okay but that transplant may be in our future.

October : On october 9, we went to seek for a second opinion on how to manage his heart failure. We were admitted to the PICU right away. On october 10, his 8 month bday, we were told he needed to have a heart transplant right away.

Oct 10- 12 : various tests were done to see if he was a candidate for a heart transplant.

Oct 13 : at 2 pm, he was officially put on the national waiting list for a heart.

Oct 15 : at 5:30 am, we were given "the call" there was a heart available for Elijah after only being on the list for 36 hours. By 2 pm, he was wheeled into the OR for a complete, life saving heart transplant. By 9 pm we were told his new heart was beating. By midnight, he was wheeled back in an isolation room in the ICU.

November : On his 9th month birthday, we were discharged to go to the Ronald Mcdonald house for the transition time. We were out of the hospital, not even a full month after the heart transplant. By nov. 24, on my 28th birthday, we went home.

December : Getting stronger and stronger day by day... So far this is the longest time we have been home.. almost 1 1/2 months of not sleeping in a hospital. A record for our family.

Elijah spent christmas at home surrounded by his loving family, wearing a santa suit

( just as I imagined he would last christmas when I was not aware of his heart defect then).

To say 2009 was eventful is an understatement. We have experienced the lowest of the lows and the highest of the highs. It was a roller coaster ride that at times I thought would never stop.

We have experienced pain, agony and despair, just when we thought, it was the end for our family, we have witnessed the greatest miracle--- a life reborn, a second chance for our son.

To our baby Rock, you are, without a doubt, the strongest person I know. You have endured so much on your short life.. I thank God everyday for making you such a little fighter, a survivor and for giving me a chance to be your mother and us, a complete family.

To all our family, friends and blog supporters of our Elijah, thank you for praying with us. The difficult journey was a little less hard and less scary because of all of you.

We survived 2009. It has been on the most part, very hard, agonizing and painful, but we will do it again in a heartbeat, if that is what it takes for us to be a family.

2009 tried to bring us down and it failed, so bring it on 2010.. We are ready for you!!!

A Blessed Christmas =)

2009-12-25T20:47:00.000-08:00

I was 7 months pregnant last Christmas.. My husband and I were still not aware of Elijah's heart condition then, we were anticipating celebrating Christmas of 2009 as a family, with thoughts of having our baby wear a santa suit.

There were times that we thought we may not see this day, to celebrate this holiday with our family is truly a blessing.

We hope that your Christmas was as blessed as ours..

with much love,

Ej, Hazel and Elijah

2nd month post transplant

2009-12-15T20:57:00.000-08:00

It has been two months since Elijah received his "angel heart"..

Two months since a great miracle happened because of love and generosity.

Please also pray for our donor's family today.

**********

I want to share with all of you a poem I came across while reading blogs of other heart babies. This poem was written for a baby with the same heart condition as Elijah- HLHS, 2 open heart surgeries, severe heart failure and then heart transplant..

The poem pretty much sums up my feelings for Elijah..

So many nights of worry, many more of prayer,

Highs and lows, thoughts from those who care,
At last the sun is rising, the clouds parting too,
The tide turning, for this fight you went through,

This memory will fade in time, so will each scar,

Only stories remind you, of the fighter you are,
How from your first breath, you had to fight,
Watched over by Angels, through day and night,

You fought so hard to stay, fought to the end,

For every second on Earth, you wanted to spend,
We all cheered you on, even harder we prayed,
Joy fills my heart now, I’m so happy you stayed,

No more machines, certainly no more close calls,

Now you are home, no more staring at the walls,
You will get to see, the world we all get to share,
In years to come read the words, that say we care,

We will see the pictures, of this fragile soul growing,

What you will become, there’s no way of knowing,
One thing for sure, you’ll make the world a delight,
Nothing will ever defeat you, because you can fight,

Who knows how many lives, you will change or touch,

Already there are many, who love you very much,
We send you our best, wish you swift recovery,
Smooth sailing is ahead, on this road of discovery,

Now you’re on the way, to a brighter tomorrow,

Free of your early struggles, all of the sorrow,
To run freely with the children, you haven’t met,
Enjoying life each day, to see how good it can get,

I wish you well as always, now spread your wings,

Fly, be free with the joy, true happiness brings,
We will await you here, as we watch you soar,
Knowing that this angel, isn’t broken anymore.

--Nothing can ever defeat you because you can fight!!!

You my son are a fighter and I am very proud to be your mother..

We love you soooo much. =)

10 months

2009-12-11T20:38:00.000-08:00

Dearest baby,

Today you are 10 months old.. double digits already.. we are very proud of you..

You love to say "papa" , "da" was your first syllable and "papa" was your first word.. I am pretty sure "mama" would be next..

You are starting to stand on your feet and sit up with assistance.. considering that we are not even 8 weeks post transplant, it is just another reminder of how strong you are.

you love your milk and now can finish the bottle without getting tired.

You never seem to get tired anymore, we have prayed for days like these to come.. to see you full of energy is truly a joy.
You have no more restrictions baby, you CAN now do whatever you want to do, you can now achieve every goal you set your special heart into. Now, the sky is the limit baby. It is a gift to be given this chance, always remember that.

You are never alone baby, papa and mama will always be here for you-- always.
All we ever wanted was for us to be together to celebrate your every milestones , papa and I got our wish and so today we pray that all your wishes will come true..

We love you so much baby..

mama and papa

Happy Anniversary!

2009-12-09T12:15:00.000-08:00

Happy Anniversary to my dearest wife. We have gone a long way in 2 years. Our journey has been different from what we expected but I would not have it any other way. I am proud to be a part of our family. I am proud of you.

We love you so much!

thankful

2009-11-27T20:32:00.000-08:00

our miracle baby

This year's thanksgiving is definitely more meaningful for us.. I remember the past years, of how thanksgiving for me was just time with family, shopping and sale. This year is different, the birth of our son Elijah and all that has happened changed everything.

While I still sometimes wish that things are different, I am thankful that this year's events has taught me patience and gratitude. I have learned to let go and finally accept that I cannot control the outcome no matter how hard I plan for things.

I am thankful for my husband and for our beautiful son. God has chosen a different path for our family but we are very thankful that we are together and that we have come to an early realization that every moment together is a gift. Life is so much sweeter when you live on the present and savor each moment.

I am thankful for our family and friends for their love, prayers and support. All throughout this journey, we never felt alone and it is because of so many good people around us, uplifting us in prayers, especially for the recovery of our son.

I am very thankful and grateful for our donor and their whole family for giving us this precious second chance with Elijah... I hope that somewhere they are all at peace and that day by day, I pray it will get easier on them.

and best of all, we are thankful for the miracle that is our son. He has taught us the true meaning of life and love. His life made our faith stronger, our marriage better and our lives brighter..

DISCHARGED

2009-11-13T12:34:00.000-08:00

the day before, a surprise visit of one of our fave resident in Elijah's old hospital..
with nurse Desi, our discharge nurse
we love nurse Gina, our transplant nurse practitioner
Elijah's new pediatric cardiologist, Dr. Jeff Gosette

We were discharged to go "home" last tuesday, November 10, 2009 , baby boy's 9 month birthday and after only 3 weeks post transplant...AMAZING...

Baby boy is such a rock star !!! we were given an estimate of 6 weeks to 2 months at least for recovery..yay!!! way to go baby!!!....

for now we are staying over at Ronald Mcdonald house for our transition time before we really head home.

stronger day by day

2009-11-12T12:40:00.000-08:00

hamming it up for the camera =)
bored and ready to go home
talking to momsie via the webcam

In under 9 months, our baby had 2 cardiac catherization, 2 open heart surgery and 1 heart transplant... WOW!!!

Our pediatric cardiologist said, it is going to be a long road, but we are now past the major hurdles and so far Elijah is winning... THANK YOU GOD...

next plan of action.... enjoy life outside the hospital and just be a baby!!!

Playing with Papa...

2009-11-08T13:35:00.000-08:00

=)

2009-11-05T19:12:00.000-08:00

somebody is ready to go home....... =)

updates Nov. 4, 2009

2009-11-04T08:09:00.000-08:00

while watching chugginton

his halloween costume -- pumpkin bib and socks.he was not able to wear his monkey suit...

baby boy is doing good... Praise God..

sorry for the lack of updates, we have been very busy with all the teaching sessions from the transplant team and then the rest of the time, we have to keep the big boy happy and pre occupied. He has so much energy now, it is amazing.. he never seems to get tired, always kicking his legs, playing with his toys, laughing and smiling..

We have been on "floor status" now for the past 5 days, it means that eventhough we are still in the ICU, baby boy is no longer listed under critical care.. It is another step in bringing him home..

Thank you for all the prayers and for loving our baby.

We miss you Momsie!

2009-11-01T11:47:00.000-08:00

thank you baby fae...

2009-10-26T18:56:00.000-07:00

Today is a special day in the heart community. 25 years ago today, October 26, 1984 baby Fae was born with HLHS, the very same heart defect that Elijah was born with... During her time, the Norwood procedures, (the three staged surgery to "re-plumb" the heart) was still considered experimental.. the outcome then was not promising, A published study at that time reported 130 HLHS babies, 55 survived the Norwood procedure , 4 went on to have the second staged procedure and only 2 survived =(
25 years ago, babies like our Elijah were considered "not compatible with life" and Parents were given the options of waiting for their baby to die in the hospital or take the baby home and wait to die...

My heart aches for those parents and for those perfect babies with broken hearts... and I am very thankful that medical science has come a long long way... Now HLHS, although it still remains to be very complex and very challenging heart defect, now we have HOPE, now we have options.The outcome for the three staged surgery and heart transplant are rising--- and we pray that in time, these will even get better.

Before baby Fae, a successful heart transplant has never been performed on newborns/babies.Baby Fae and her surgeon, Dr. Bailey opened so many doors for us "heart" families, because a baboon heart transplant was not successful,their story raised awareness on the importance of organ donation especially for babies.They paved the way for pediatric heart transplant to be a possibility.

Now we have options and are given so many chances. Our braveheart son underwent the first surgery when he was only 8 days old and second surgery at 4 months of age and when his heart when into severe heart failure, we were then offered the heart transplant.. and for the rest of my life, I will always be thankful for those chances, those miracles.

We will always be forever grateful to the parents and those special babies who have come before us.. They are the pioneers, because of them babies like Elijah now have a fighting chance.. We will not be here without you.. Our love and prayers are with you all.

off the o2

2009-10-25T18:05:00.000-07:00

For the first time in his 8 1/2 months of life, our baby boy is without oxygen support !!! ..

Yes, it is true, he is officially OFF oxygen support... Braveheart is very happy and so are we...

He is satting 99-100 on room air... AMAZING!!!!!

The transplant team and his surgeons are all very pleased with his recovery.. We are only 10 days post transplant and yet we have our wiggly,very active and smiley baby boy back..

Thank you God.

a cleaner room

2009-10-24T15:50:00.000-07:00

(top photo)Busy room - 2 days post procedure.... (below) No more machines - Today

Things are looking up. Recovery seems to be on track and day by day we loose a machine here or an IV line there.

Today Elijah has just one line left that is rarely used. We can carry him now. What joy!!! we miss holding our sweet sweet boy..

papa and mama breathing a little easier now.... =)

=)

2009-10-22T13:49:00.000-07:00

4 days post transplant

cute and wide awake....

thank you for all the love and prayers.

Extubated!

2009-10-20T15:20:00.000-07:00

Everyday Elijah keeps on surprising everyone... His doctors were leaning more on him not handling extubation to nasal cannula (of the wall oxygen). They thought he would need CPAP (high flow oxygen) to get him through. Elijah proved them wrong. He got extubated without breaking a sweat and has been doing good for the past 8 hours. Thank you for all your prayers, we know we have a long way to go but one things for sure were ready to fight it out no matter what.

day 3 post op

2009-10-18T08:41:00.000-07:00

We are having quiet, uneventful days.... and we are loving it..

Elijah is off the paralytic medicine, he is moving quite a lot when he is awake--- more than what they want him to do so he is getting additional doses of ativan and other sedations whenever needed.

So far, he is staying on the course , monday will be a big day as it is extubation day... please pray with us that he will do good without the breathing tube.

A Change of Heart

2009-10-16T08:00:00.000-07:00

October 15, 2009 --- we received the gift of life, a new healthy heart for our baby boy.

It is truly a miracle.

We were told that awaiting a new heart would take 3 months on average.. It can be earlier, it could be longer. The waiting part is the hardest.. We have to keep Elijah as "healthy" as possible, with his poor and declining heart function, we were very scared.

The night before, Ej and I once again had a serious talk, he told me, whatever happens, our baby will be loved.. whether he will stay with us or will go to heaven, he will be loved.. We knew that this is beyond us, we have offered and surrendered our son to God, many times over. Our prayer, Thy will be done..

God is good, the next morning after our agonizing talk, only 2 days after being on the list, we received the call..It was very surreal. There are no words to describe our emotions, we were very happy that an angel heart came in time and at the same time, sadness for the donor and the donor's family. We have been to a point that we almost lost our baby and the grief and pain is so intense and for them to give us this gift of life is truly amazing. In their moment of darkness they have chosen to make it our brightest, in the time that their family was forever broken, they gave ours the chance to be together.

The next 48 hours will be the most critical, so far our braveheart is doing what he does best-- hanging tough.. We were told to expect to see him hooked up in an ECMO machine because of his health, he came out of the OR without one.
The surgeon told us, it was one of the hardest heart transplant he did but he expected that already and he was prepared for it. He said, baby boy did not give him any surprises and that he was doing as well as he should be.. Praise be to God.

Please , please, please pray with us that our baby will not have any complications.. Heart transplant is not a fix.. we will also be experiencing a lot of issues, please pray that he will be a rockstar through it all.

the latest..

2009-10-14T09:21:00.000-07:00

It took more than 2 days for Ej and I to have some semblance of clarity. We spent the past 2 days, crying and shocked.. we are now slowly facing our new reality because we have to be brave and do what is next in this journey.
Yes, we are still in the PICU.. Our baby's care is being handled by the transplant team..
Yes, he is now on the list of recipients waiting for a donor heart. He was officially put on the list at 2pm, central time, tuesday, October 13,2009.

We met with the heart failure specialist who after consulting the pediatric cardio thoracic surgeons said that our baby's heart is so enlarged, the function is very poor that there is possibly no way for us to make it through the third surgery. Transplant is our only option. It is his only hope of surviving.

Ej and I are still in the process of understanding everything that comes with organ transplantation.. It will be a long process, as we had our hopes up with the three staged surgery. Going the transplant route is very hard, we are not only dealing with our emotions but also we hurt for the donor family, the feeling is so intense, I could not quite put it into words.

We are humbly asking for prayers and mass intentions for our baby.. That he will be as comfortable as much as possible as we go through this very difficult journey..That there will be a healthy angel heart in time.. That he will remain stable as we wait for the heart..and most especially, peace for the donor's family.

We will try to update this blog whenever we can. we are emotionally and physically tired. Thank you for all the words of encouragement, each word is a push for us to be stronger.

Thank you for loving our baby.. He is thriving with his poor heart because of all our love and prayers.

8 miraculous months

2009-10-10T17:24:00.000-07:00

Dear baby,

Happy 8 months..... We can't believe that it has been 8 months already... There are times that I still feel the way I felt on that cold february day, hours after you were born, we were given the devastating news of your heart defect. How your papa and I along with our whole family cried hard and prayed harder for God to grant us a miracle.

Eight months later to be told that you need a new heart sooner than expected here we are again. We love you more each passing day and always know we are here for you no matter what. We are very sorry you have to go through so much and wish we could make things better.

We actually are writing this not for your benefit but for ours because we know looking at you no matter how much pain or discomfort you feel you still try to put smiles in, even faint ones at that. That is the kind of person you are. You put light in our darkest hour with just a smile.

We love you so much baby.

mama and papa

a change of plan

2009-10-10T11:15:00.000-07:00

So the evaluation/meeting with the other hospital did not go as planned.. They ended up admitting Elijah right away.

They are doing many tests, we are not familiar with their way of care but we are doing our best to be on top of everything..

My mind is in turmoil right now, I don't even know how to function.

Please pray for our baby.

2009-10-08T03:09:00.000-07:00

We are home and very happy.... =)

Sorry for the lack of updates.. We have been home for 2 weeks already. We are slowly going back to our "home routine". Hospital stays, especially the unexpected always mess up our groove..

Baby boy is doing okay. He has been drinking more and more from his bottle now. We are still hesitant to take out his NGT because he is on so many medicines... so many... =( For now, the NGT is our friend, we can give him the medicines without him ever tasting the awful stuff.

He has been coughing every now and then, the doctor said, we should not worry yet--- easier said than done, I mean, how can we not worry??? his oxygen sats are okay, his temperature all normal and he has been playing and smiling all day, so we will do our best not to freak out.

On other developments, he is now turning over from being on his back to going on his tummy.. he is tolerating more and more time of being on his tummy. way to go baby!!
We will have our first ever appointment to the other children's hospital for a second opinion. To say that it is nerve wracking for Ej and I is an understatement.. Please pray with us.

Thank you for dropping by to check on our little rockstar...

Home away from home.....

2009-09-24T05:12:00.000-07:00

On the day Elijah was transfered from Good Samaritan Hospital to Hope Children's there was so much on our mind. One of the things we worried about was how would we be able to stay with him most of our time since we lived about 21 miles from the Hospital...

Turns out a new Ronald Mcdonald House just opened 2 months before Elijah was brought over. This place was truly a blessing to us and all the parents who have a sick child at Hope since it is barely a 3 minute walk away.

One of the most important things in long hospital stays is pacing yourselves for the long haul. The RMH brought us closer to our son and allows us to take quick naps away from the hospital.

We are forever grateful and have a new found love for Mcdonald's...

The RMH house in front of Hope Children's Hospital

One of our rooms during our previous visits to Hope.. ( Glen )

Although we eat most of the time at Hope, we do appreciate the snacks available....

2009-09-18T18:05:00.000-07:00

practicing sitting up with mama

Baby boy is on the roll =) we continue to have good days, thank you Lord! and thank you too, our prayer warriors.

First update--- The result of the blood culture came in and it is.. NEGATIVE!! big boy butchokoy is infection free.

The other day, we went down to Radiology Lab for a swallow test complete with sweet flavored barium and X-ray to see if big boy can suck and swallow. Now we all know how much our little guy loves his milk so we thought it was not needed-- however, we did not want to deprive Elijah a mini field trip down the lab. He was all smile while in his carrier and he giggled and laughed during the exam and passed the swallow test on the first try.-- that's our boy.. =)

He is getting more and more active which means more playing time and more activities.
Papa Ej asked for a go signal to take him out of his room and in the gardens for morning/afternoon walks. We did not get the permission, so Papa Ej and Elijah decided that the hospital hallway will do for now.

Elijah is also loving his sitting up practice time. We were told that because of his open heart surgeries so close together, he might not be strong enough or he might not tolerate it--- well big boy is just tolerating it just fine--he still needs support doing it but we are sure he can do it in his own time.

While we don't have a definite time yet, we think that we are close to getting back to you-know-where.. We don't want to say the H word out aloud, it may get jinxed.. =)

Thank you for checking up on us and please continue to pray for our little brave heart.

Having a good day....

2009-09-17T18:34:00.000-07:00

Car seat test...

2009-09-16T05:54:00.000-07:00

April 27, 2009

September 2009

After Elijah's first surgery, we were not allowed to go home unless Elijah passed one last test - getting comfortable in his car seat/stroller. We practiced 2 days before his test and Elijah really made us nervous the whole time because he hated his car seat. He would cry the whole time we put him in his seat. The flashes of Elijah crying the 19 mile drive home just after having one of the most intrusive surgeries in the world got us really scared. The moment we started the car and got moving things changed. He fell in love with his chair and relates it to going for a ride. Elijah likes...no, he loves speed. Today we cannot get through a day without going for a ride on his speed machine...

Medical Updates - The Floor

2009-09-14T18:49:00.000-07:00

We were just told that a bug grew out of the tip of Elijah's line. Were praying its just something that got on his line and not in Elijah's system. Baby boy is still NOT showing any signs of infection, his white blood count is not going up and all his temperature checks were normal. We are waiting for the result of his blood culture. Please pray with us that it will be "negative".

Today was a big day for Elijah. He got his central line removed and got back to bolus feeding. We hope no reflux issues come up so we could move forward and increase his feeds. Doctors keep on saying how good he looks in spite of his heart function and they are leaning on letting us go home with him.

Being down here on the floor is a lot of work. The ratio of nurses to patients here is 5 to 1. We try to balance everything from giving medications to assisting in tests while keeping Elijah happy. As long as Elijah is happy were good..

Back to the floor...

2009-09-10T10:41:00.000-07:00

The floor is the step down room before going home. Kids that come here usually are sent home in a couple of days. In our situation though we might be here for quite some time. Elijah's heart has not changed much but doctors are always surprised how he's doing clinically (appearance and how he interacts). They were saying his case was a bit tricky because he looked so good while having poor heart function. In theory this is possible but we all want to be on the safe side. The plan is for us to be here until we see significant improvement in Elijah's function. We told his doctors that we don't mind staying here for weeks just as long as we see improvement before taking him home again. Thank you again for all your prayers....

Happy 7th month baby

2009-09-09T18:34:00.000-07:00

Dear baby,

Today you are 7 months old.... You are slowly becoming a big boy.
Papa and I keep looking at all the pictures we have of you and we could not help but laugh because all we see in the camera is your smiling face. You have the sweetest smile baby. Your smile makes all the bad days good. Your smile tells us that you are feeling alright and that everything will be okay.

One of the nurses came by earlier to do your routine assessment. You cried and protested all the way through and yet you still gave her a big smile afterwards. She told us : "you have a good boy, you must be really proud" and we are very very proud of you, but somehow it implies that we have more to do with your awesomeness when really baby, it is all YOU.

You are an amazing little boy who keeps on beating the odds.You are a true miracle.You are our greatest inspiration and our most wonderful blessing.You are a very special baby with a special heart that has a vast capacity to love and be loved.

And while it would have been better to celebrate your 7th month birthday with a party at home surrounded by our family and friends, don't you worry baby, we will still have our own mini party. Papa and I will sneak in a cake inside the ICU for you to blow... We are pretty sure the nurses would not mind, after all, they can't seem to resist your handsome smile.
We love you baby, with all our heart

- mama and papa

rock defying odds..

2009-09-09T04:38:00.000-07:00

Hope is something very subjective. Something based on your experiences and personal beliefs.

A common person looking at our situation from afar would probably imply or even say that if things are getting worse to just give in to the inevitable. To give up. Not knowing that their words are the reflection of their own experiences and will. Its not about having a negative or positive outlook. It's about what life has instilled in your soul that fuel your response to adversity.

From day one, our son has been defying all the odds. Being an undiagnosed child of HLHS, he has not only shown us the will to live, but the right way to live life. He finds laughter amidst the discomfort, he finds joy in knowing he is loved and he shows the will to challenge what is expected of him.

Today our son's heart is failing. It took a beating form surgery after surgery. Functioning with just one ventricle has taken it's toll. In spite of this he would smile at everyone with so much love in his eyes. He would laugh without a hint of fear in his voice. He is showing us each and every day that no matter what the odds are, we should keep the faith and believe that there is always HOPE.

Our superhero

Busy day...

2009-09-08T17:02:00.001-07:00

Couple of tests were done on Elijah today (EKG and ECHO). He was such a good boy for both procedures but more so during echo which lasted a good 35 minutes. He played through the whole thing and tried to grab the probe a couple of times.

On top of that we were moved to PSHU (Pediatric Surgical Heart Unit) due to lack of beds in PICU (Pediatric ICU). We don't know how long are we going to stay here because PSHU is where babies recovering from surgeries such as the Norwood and Glen are brought. We are expecting that they are going to bounce us to the floor as soon as we get rid of Elijah's Milrinone. Moving to the floor brings us a step closer to going home plus my wife and I could both stay with him throughout the night.

new medicine

2009-09-07T22:14:00.000-07:00

Today we started Elijah on a new medicine, carvedilol. It is used to treat heart failure. Originally it is used to aid the left ventricle. We are praying that this would help improve the function of Elijah's heart -- even if he doesn't have a left ventricle.
Dr. H, his cardiologist was on the fence about giving him this medicine for quite some time now-- ultimately he decided to try it on Elijah. The goal is that carvedilol will lower the heart rate, so it would mean less volume and less stress for his heart. This medicine is a little tricky-- it would essentially decrease the pumping work of the heart but at the same time we do not want his heart function to decrease any more.

So Mr. Smiley is under close monitoring to see if this medicine will help him or will have an adverse effect on him.. Aside from not wanting to go to bed, everything seems to be okay. It is too early to pinpoint his sleeplessness on this drug because this is only the first day--- and also because today is Labor day and Uncle Josh was free to play with him all afternoon . =) Elijah loves it when lolo, lola and uncle Josh would visit him--- and even after they are already gone, he is still happy and just wants to play and play.. It makes me wonder sometimes, if we really do need the heart failure medicine because this little boy's energy is just limitless..=)

Keep on rocking baby. We love you!!