Pictures of Noah

Confusion

I haven't been able to get a hold of Alison this past week so I have no idea still what the plan for Noah will be. He's still on all his meds. I think he's suppose to come off the Imuran but since no one has officially told me "Stop the Imuran" I just keep giving it to him. I also don't know what the plan is for his "stiff" heart. Hopefully I can get a hold of her before we go on vacation next week. I really would love to reduce his immune suppression before we venture out into the world. It also might help him get over this HORRIBLE cold he just can't seem to shake. The Dr told me it was allergies but our sweet dear friend Brennon is sick now after he came over with the same symptoms so it has to be a sickness and not allergies after all. If I can reduce Noah's immune suppression he just might be able to finally kick this thing in the bum.

Anyways... other than being sick, Noah is doing good. I took his to get his hair cut the other day. Unfortunately it was right at nap time and he didn't make it through the entire cut. So I paid for half a hair cut and it looks horrible. I'm going to have to fix it before we vacation. owell.

Not The Sickies Again!!

Noah is sick again. He sounds so horrible. He can barely breath. Even though I've given him his inhalers and Tylenol and have a humidifier round the clock... he sounds like he has croup. Poor kid. After all he has been through.

It's been kind of going on for months. It sort of swells. Gets really bad then slightly better then really bad.... Last Ped appointment we decided if it didn't get better we would try an antibiotic.

I actually think he might have strep this time. But we'll see. He has a nurses appointment tomorrow morning to get his immunizations but I think when I take him I will post pone them until he feels better and then ask for a strep test.

All Is Well

We are home and all is well!

What a week. I'll be posting a FULL update of our trip to Denver over at Memoirs of a Mommy very soon. But here is the Noah update:

We took Noah to The Children's Hospital bright and early Monday morning. While at the lab waiting to get his Cyclo level checked, we ran into Julia and her mom. She is a little girl who got her heart transplant last month and her Mom recently joined a Support Group called Heart Beats that I am a member of. So that was neat.

Then we went to get his Echo and EKG. The Echo didn't go so well. Noah was so tired and grouchy since he hadn't eaten and he just wasn't having it. Then we got to see a friendly and familiar face, Alice our EKG Nurse. She is as sweet as ever.

The actual Cath was delayed until about 1:30 due to the previous Cath taking longer than scheduled. But since Noah refused to drink anything, they decided to give him an IV early so they could get some fluids in him. But, since he is a professional kicker (I have the bruises to prove it) they decided some Cloral Hydrate would be in order so he would sleep through the IV. This worked out great and he ended up sleeping the entire wait until his Cath.

He finally was taken in and I got to follow him over to the Cath Lab. Saying good bye to him was hard. He was completely asleep which made it a LOT easier. I gave him several kisses and off he went.

Shane and Lilly had come with me to the Hospital so I wouldn't have to wait alone, but during the extended waiting time, Lilly ended up pooping through 8 pull-ups and that was all we had brought with us to the Hospital. So Shane had to take her back to the RMH and I ended up being alone anyways. But it turned out OK. I had company... I'll explain in a minute. But I felt so bad for Lilly. I think she was just so nervous. She knew Noah was "sick" and I could tell she was worried. But Shane said she got back to the RMH and went right to the play room and had a wonderful time.

After Noah went in and I went down to the cafeteria to eat. While there, I met up with Julie, Lacey and Jacob. Julie is Alan's Grandma. Alan is one of the most precious little boys I have ever met. Julie found Noah's blog while surfing for info on Heart Transplants and contacted me. It was SO nice to sit with them and get to know them. Not only are they wonderful and friendly and funny people, but it helped me not sit and stew and worry about Noah.

After lunch we got to go meet Alan (he's waiting for his heart transplant so PLEASE remember him in your prayers). And let me tell you, he is even cuter in person. He slept most of the time I was there but that didn't keep his special spirit from touching me. It actually reminded me quite a bit of what it was like to visit Noah while he was waiting for his Heart. I have NO doubt that this precious child will be getting his new heart. I just hope he doesn't have to wait very long.

After Noah's cath was done Dr. Pietra came and talked with Shane and I. (He finally came back ;) ) This is what he said:

Everything looked great with one exception. Except its not really an exception, more like an asterisk. Noah's pressure's were good, his Aortic Arch isn't smooth, but there is NOT a Coarct. There doesn't seem to be a thickening of any of the veins or arteries but you can't really check that for sure until he is older. But the asterisk part is his shortening fraction. It's the stiffness of his heart. When his heart opens back up after a beat it doesn't open up big enough. Now we have known from the beginning that his new heart was stiff (I have NO idea what causes this. I have wondered if it had to do with the time the heart was on ice as it was almost 6 hours but I was told it wasn't). He has been on the Verapamil since the beginning and on the same does. We figured it would help and he would slowly out grow the the dose. Problem is, it hasn't helped or at least enough. What should be around a 4 is actually a 12. Not a good number. BUT, at least it's not a 20. THAT would be bad. So, we needed to wait to see if there was any rejection in the biopsies as that could cause this. Then Dr. Pietra could decide what we needed to do. Early the next morning, Alison (who I got to see since she was back from Maternity!!!) called me first thing and didn't make me wait till noon. And told me what I already knew but LOVED to hear...

ZERO REJECTION!!!

This means Noah isn't rejecting his heart!! He gets to reduce his clinic visits and lower his immuno-suppressant. Actually gets to come off one of the meds and lower the dose of the other. GREAT NEWS!!

So back to the shortening fraction. Since we now know it's NOT rejection, I am waiting to hear from Dr. Pietra to see what he wants to do and how we should treat it. But like he told me in the recovery room... Don't be worried. Everything looked great with the exception of that weird asterisk and lets face it, its Noah. It wouldn't be Noah if there wasn't an asterisk involved. :)

Another great thing, we decided to have the Lab send me all the supplies I need to take his blood myself and FedEx it to Denver so we can check his level using the method we are used to so we don't over medicate him. This is great for two reasons: One, we can get the right level so his Cyclo level can be managed correctly and Two, because now I don't have to go up to the hospital at the Butt Crack of dawn to get his levels drawn anymore. I can do it from home!!!!

The next day Noah was really puffy and weak. He was also tethered to a Holter Monitor (a portable EKG) for 24 hours. But he quickly got better to my relief and before I knew it he was crawling around and getting into things like usual.

So, we got to see Alison (We LOVE you Alison!!), Carrie, Dr. Pietra, and some of our favorite Nurses. We got to meet Alan and his wonderful family. We got to meet Julia and her Mom. We had a wonderful outcome with Noah's cath. Noah did well and recovered beautifully. And we even fit in a few family fun things to boot. All in all, I would say it was a great and yet very tiring trip.

One last thing... this morning Kendra from the Denver Ronald McDonald house was at the Aurora house and I was able to give her the Thank you note and donation in Noah's honor. So a HUGE thank you to those of you who gave (Your names were included in the Thank you note):
Mom and Dad, Julie, Jeannie, and Jen.

What's That Smell?

The first thing I said when we got off the plane?

"It smells like Denver!!"


Even though I didn't live here for very long, Heavenly Father helped it to become my home. So to come back and see familiar places has been nice. (Seeing them with both kids and my hubby in the car and knowing we get to all go home TOGETHER doesn't hurt either!)

Bright and early tomorrow Noah goes in for his Heart Cath so I don't have anything to report yet. But wanted those of you who are wondering to know, that we are here safe, we got checked into the new beautiful Aurora RMH (it's closer to the new hospital) and we are ready to go.

I will update tomorrow evening when I can get online, or you can follow my Twitter Updates for quicker updates on how everything turns out.

Thank you for your prayers and well wishes. It means a lot.

The Best Childrens Hospitals 2008

***A VERY IMPORTANT UPDATE***
I just found out that this link shows the ranking for heart and heart surgeries but this does NOT include TRANSPLANTS and transplant related care. So this is great info for CHDs but for those like Noah (Beckham!!) you don't want to go off of these stats for your care. Very good to know.


For all of our Heart and Heart Transplant friends, I thought you would find this link very interesting.

The Best Children Hospitals 2008: Heart and Heart Surgeries

Happy Birthday Noah!

My Sweet Little Man,

Oh, how you are a miracle before my eyes.

Since the moment you came into my world you have taught me more about Love than I ever dreamed possible. I have learned about sacrifice, and gratitude, and faith, and hope. How is it possible for one little man to teach his mommy so much? Is it because you have the heart of an Angel? Because you do? Did you know that? Did you know that when you were born, your little heart was so sick. But it wasn't your time to go back to Heavenly Father. So a loving family gave you a new heart when their baby went home so you could stay here with us.

It's important that you know this. So you can live a life worthy of this wonderful gift. I'm not worried that you will. Because you are the sweetest little man I have ever met. And if there was anyone worthy of an Angel Heart it is you, my son.

You bring me such joy.

Never forget that I love you more than words could possibly say. Never forget how many people loved you before they even knew you. Never forget how many prayers were sent to Heaven just for you. And most of all, Never Ever forget that Heavenly Father loves you and has blessed you and will continue to bless you and He will always be there for you.

You are a chosen spirit. Your life and your tender personality will touch the lives of many. I am excited to watch you grow up into the honorable man I know you will become.

Happy Birthday my miracle baby. Today is a wonderful day. This is the day you were born.

I love you!

Love,
Mommy

First picture with mom (ever!)

Yucky bili lights and only a few days old.

First time mom got to hold you. I insisted they let me before Life Flight came to take you to Denver.

Life Flight getting you ready to go.

Your first picture in Denver.

Daddy got to hold you before he went back home to Salt Lake.

A few days after you got your new Angel Heart.

Bath time with Daddy at the Ronald McDonald House. We took the Oxygen off just long enough to get a picture of your pouty face.

You grew up so fast and got even cuter. How is that possible!!

Look at you move? You are my miracle bundle of joy!!

Prayer Request

As you know, next Monday (the 16th) we will be in Denver for Noah's first year Heart Catheter.

As you also probably know, my personal experience with sending him into the Cath lab has not been one of great pleasure or comfort.

So I am reaching out to all of you. Regardless of faith, regardless of religion I ask that you please keep Noah in your prayers this week. Ask the Lord to bless Noah that all will go well. That he will be sustain and heal quickly. That there won't be any complications and that He will guide the Dr's hands that the operation will go smoothly.

And for those of you who are interested, we will be having a special day of Fasting and Prayer this Wednesday for those who would like to participate.

If you are not religious, even your loving thoughts and well wishes are greatly appreciated.

Thank you so much for your continued support and friendship. I know it is because of the many prayers on Noah's behalf that we are here today celebrating his first birthday. I feel like the most blessed mother in the entire world. Thank you to all of you and to my Father in Heaven, who listens and hears our prayers and who loves His children.

Noah's Birthday!

Noah's first birthday is this Wednesday so we had a huge birthday celebration this weekend. My Brother and his family who I haven't seen in over a year came to town (this was the first time they had ever met Noah) and Shane's family even came down. It was the best weekend EVER!!

Noah was spoiled beyond belief. There is absolutely NO question that this little boy is L.O.V.E.D!!

The day before we also took family photos which from what I saw turned out GREAT!! I can't wait to see the finale product.

I have tons of pictures to post and will get to them very soon.

Please Help Me Raise Money For A Wonderful Charity

I am not one who likes to ask for things. I have a hard time asking for help even if I need it and the only thing I don't have a hard time asking for is prayers on behalf of my babies.

But this is different.

In case you haven't noticed, in my sidebar is a Chip In box for a fundraiser that I have been silently doing to help raise money for the Denver Ronald McDonald House. I want so badly to go back there this June with a donation on Noah's behalf. I, myself, can not afford to give all that I would love to give (his medical bills are just too much) and so I ask those of you who can, for help.

Two wonderful friends have already donated to get help get me started (thank you Jeannie and Jen) and for the rest of you who are interested, we have until Noah's birthday on the 11th. That is when the fundraiser will close. Then, when we go back to Denver on the 14th, I will be donating all the funds to the Ronald McDonald House in Noah's name with a card that had the names of all the donors names included.

Please help me thank this wonderful Charity for the HUGE blessings they gave us this past year. All you have to do to participate is click the banner in my side bar. Its really easy. And I promise, all the donated funds WILL be given to the Ronald McDonald House Charity.

For those of you who can't give, that's okay. Your prayers were more than I could have ever asked for.

Thank you and much love to all!

Clinic Update and 4 Month

Noah had transplant clinic today. Want to know what is really exciting? He may not have to go again until October!! You read that right! OCTOBER!!

His next appointment would be in June but we are going back to Denver for his One Year Heart Cath. If all goes well (as I suspect it will since his med level was good and his echo looked great, and he's doing so well they didn't even need to do an EKG today) then his schedule moves to every 4 months!! Which means we won't need to go back up until October!! We'll go back up every 2 months to check his Cyclosporin level but he will only need Echo's every 4 months for the rest of his life (and then routine Heart Caths every two years).

I have to admit, when Marian first reminded me about this, my heart actually skipped a beat.

You see, there comes a level of comfort in going to clinic every so often to have his heart checked to make sure everything is ok. To know we won't be going, is a little scary. But then, to know we won't be going... there is some freedom in that too!! What a wonderful thing! And Marian said if I ever get a little worried and want him to be seen, all I need to do is call and come on up. (They don't like to go as long between appointments as Denver does. But I am sure they would be more than happy to see us regardless.)

Man... Its just so weird to think back upon this past year. With everything that we have been through. To think all of this has happened in only this short period of time. There were times it seemed like we would never get to the point were things were normal again. Were things would never calm down. There were times when it seemed like life would always focus around the NICU (or the CICU) or around weekly or bi-weekly Hospital visits. Sometimes going to the hospital every day of the week. And yet, here I sit... feeling normal (if I dare say it.) Yah, we go to the hospital, but not nearly as much as some. Yah, we deal with daily medication, but not nearly as much as some. Yah, we have Occupational therapy and Physical Therapy, but not nearly as much as some. These are things that everyone deals with on different levels. What matters is I have a beautiful son, and a happy family, and we are blessed.

I am involved in Congenital Heart Defect Awareness and Heart Transplant/Organ Donation. My Brother and his Family are involved in Preemie Awareness and Hydrocephalus awareness, My Sister-in-Law's sister is involved in Kidney Transplant Awareness... What I am trying to say is that we all have our "things." I'm proud of my little hero and all of the awareness (and faith) he has brought me.

Where Are My Ear Plugs? WHAT? Where Are... Never Mind...

We went to Idaho this past weekend to visit Shane's family and had a WONDERFUL time. I will post pictures all about our wonderful time over at Memoirs of a Mommy very soon.

Noah did really well the entire time. He slept and napped well. On the way there he slept and was a good boy.

But it was an entirely different story on our way home.

A trip that would normally take us 2 1/2 to 3 hours took us 3 1/2 hours, required 2 stops, and we had to listen to Noah scream the entire time. And I don't mean off and on he cried. I mean he SCREAMED and SCREAMED and SCREAMED the ENTIRE time we drove home. By the time we got home I thought I might just be losing my mind.

It was horrible. There was no reason for him to be crying. Then this morning he was crying again. Shane put him back into bed and he fell back asleep. When he woke back up 2 hours later (off his normal schedule) he was better.

Our friend, Brennon, has been screaming all day today too. I wonder if they can sense something. Like how animals can sense Earthquakes or storms coming... wouldn't that be strange?

A Few Pictures

He's getting so big!

Still Waiting and The Sickies

Noah got his Cylco level checked last Thursday. We still haven't gotten the results back. I'm hoping the are within range.

He is also still sick. He has the nastiest runny nose and a cough. It just won't go away. It's either a virus he can't shake or his allergies and asthma. I think it's a virus. But I'm getting really sick of boogers.

A Yard Sale!!

That's Right!!

We are having a yard sale! Shane and I finally found the time to sort through all our stuff and we are having a Yard Sale this Saturday to help pay off Noah's medical bills.

So, if you live in Salt Lake (or any of the surrounding areas) PLEASE come on over. If you need the address, send me an email and I will send it to you.

It will be Saturday at 7am until everything is sold or people stop coming (at least 1pm).

We really appreciate your support!!

A Beautiful Place

Beckham's Mom, Kim, told me of another baby... soon to be born Mia... that was diagnosed with Critical Aortic Stenosis and a bad Mitral Valve. She too will need a Heart Transplant when she is born.



This is the first baby I have learned about that had Noah's same diagnosis. Until now, Beckham has been the only other baby with Heart defects similar to Noahs. Many of the precious Heart Babies I have met are HLHS.



Now, this doesn't really matter. But I guess because when I first found out about Noah's condition I felt SO ALONE. I had never heard of anyone who had been through this sort of thing (That is VERY different now) that I feel a greater connection to those who have the same diagnosis. It's almost like I have an instant bond with them because they know they same terms and the same procedures and the same circumstances... the world of HLHS can be very different. (although, my favorite poem was written by a mother of a HLHS baby so I guess it's not all that different.)



Anyways... I guess what my ramblings are trying to say is that I just feel extra sensitive when I hear about a baby who has the same condition as Noah. It touches an extra tender spot in my heart because I know. I feel it. I live it.



And while I know there really isn't anything I can say that will make their journey any easier. It's a journey that only the Lord can carry you through, I hope (and pray and pray and pray) that by seeing Noah now (MY JOY) they will know that things can and will be better. That it's a rough road that leads to a beautiful place.



My prayers are with you baby Mia and family.

Rescheduled

I got a call this morning.

Noah's Heart Cath has been rescheduled. Only a week earlier but it's no longer on the same day we went last year.

Which is funny. Cause the thought had crossed my mind earlier that I should call and reschedule just to help set my mind at ease. But then I realized if I did that, I wouldn't be showing faith that the Lord is guiding and directing things and blessing Noah just as he has from the beginning. So I never called.

And now... the date has been changed on it's own. It's almost as if the Lord was just testing my faith. I doubt that's what it was. Because it really is no big deal what day we go back. But I still found it interesting.

A Precious Moment

Today Noah did something he never does. He fell asleep in my arms cuddled against my shoulder.

He had been awake for several hours and he just refuses to nap unless he is laying down in his bed. Since I was never able to hold or rock him to sleep when he was little he won't let me do it now. But today, I guess his exhaustion over ruled his normal behavior because I turned him around and held him close and he laid down and held still. A few times he would pop his head up and look at me and I would whisper "lay down" and he would lay his head back down. He eventually fell asleep.

It was Heaven. Just pure heaven. All a mother ever wants to do his hold her baby. I remember how my heart just ached and ached to hold Noah after he was born.... that's a sad memory. But today was a very happy one. I loved just sitting there with my sleeping baby cuddled in my arms breathing on my neck.

I am very blessed.

Today's Clinic Visit

Noah had his Transplant Clinic Visit today.

He is such a GREAT patient. He never cries during his blood draws. But he ALWAYS licks the Echo wand. Crazy kid!

His Echo looked fine as did his EKG. Only things that concern me are his weight. As he hasn't gained any in the last month. In fact, he has lost part of an ounce. Yet, he eats a TON and still doesn't get much exercise. And his Cyclo level was low (60 down from 90) so we have to increase his dose from .35 mls to .37 mls. Which means another blood draw next week. I just hate it when his level is off and we have to mess with his all the time. I like it to stay nice and steady.

His next appointment is in 5 weeks, then in June we go to Denver. Dr. Everett has gone on maternity leave so I'm not quite sure when she will be back. Hopefully in July when we come for that appointment.

We did get to see Monica and Mackenzie today. Poor little Mackenzie broke her elbow falling off a chair. That sweet little girl. It's so sad to see her in a cast but she sure did look cute!

We also saw Kaidence but only from a distance (she is VERY popular at the hospital so it's hard to talk with her and her mom). She looked great though. So I hope that means she is doing good.

Noah has also started sitting up about a week and a half ago. That was a real fun milestone. His OT therapist is just wonderful and works real hard with him every week.

So, things are good. Thanks as always for your prayers and best wishes. We love you all.

Much Love,
~Crystal

Religions Speak Up For Saving Lives

Religions Speak Up For Saving Lives
by Heather May, SL Tribune, http://www.sltrib.com/

May - When deciding whether to donate their or their loved ones' organs, many will turn to their faith to find the answer.

In an effort to encourage more donation, Intermountain Donor Services this week reminded Utahns that most mainstream religions encourage donation or leave it to the individual to decide.
''One of the biggest questions people have from time to time is, 'What does my religion feel about donation?' '' said Alex McDonald, Intermountain Donor Services spokesman.

Leaders from four religions - the LDS Church, United Church of Christ, Congregation Kol Ami and Quaker - held a news conference Tuesday to explain their faith's teachings.

The LDS Church recently changed its statement on organ donation from one of neutrality to calling the giving of organs and tissues a "selfless act that often results in great benefit to individuals with medical conditions."

Scott Parker, who represents the LDS Church on the Salt Lake Interfaith Roundtable, cautioned that the decision is still an individual one.

Rabbi Tracee Rosen said there is a misconception that donation is considered a "mutilation" by Jews because of the sanctity the Jewish tradition places on the ritual cleansing of the body and the teaching that all body parts should be buried.

"The opportunity to use a part of the body in order to save somebody's life is in fact encouraged," she said, recalling one of her congregant's daughters who received a heart transplant over the weekend.

The donor "gave a 38-year-old woman a chance to have a normal life," Rosen said.
Russell Baker, pastor of a United Church of Christ in Bountiful, said his denomination "strongly" encourages donation. He is signed up to give.

"I want to continue an act of grace even in my death," he said.

Elaine Emmi, a Quaker and chairwoman of the Salt Lake Interfaith Roundtable, said she plans to donate her body to science, though her church has no set doctrine on donation. She encouraged religious leaders to ponder donation, because they may be asked by their members what to do.
Matt Robinson, who attended the news conference with his 2-year-old son Brick, hopes such statements will help the boy get a kidney. Brick was born with just one that wasn't fully developed, and he has been on the waiting list since January.

"It may put to rest any preconceptions," said Robinson, a member of the LDS Church who lives in Eagle Mountain. "When the name Christ is used, people are more willing to open their hearts."
* HEATHER MAY can be reached at hmay@sltrib.com or 801-257-8723. Send comments about this story to religioneditor@sltrib.com.

Organ and tissue donation by religion
Baptists: Donation is a compassionate and personal choice.

Buddhism: Donation is a matter of individual conscience.

Catholicism: Donation is an act of charity and love.

Christian Science: Donation is an individual decision.

Episcopal: Donation emulates Christ's sacrifice for mankind.

Hinduism: Donation is an individual decision.

Islam: Donation fulfills the priority of saving human life.

Jehovah's Witness: Donation is an individual decision.

Judaism: Four major branches encourage donation.

Lutheran: Donation contributes to the well-being of humanity.

LDS: Donation is a selfless act to be considered on an individual basis.

Pentecostal: Donation is a personal choice.

Presbyterian: Donation is encouraged.

Quakers: Donation is an individual decision.

Seventh-Day Adventist: Donation is strongly encouraged.

Shinto: Expresses concern about "injuring" a dead body.

Unitarian Universalist: Donation is an act of love.

United Church of Christ: Donation is strongly encouraged.

United Methodist: Donation is encouraged.

April Is Donate Life Month

April is National Donate Life Month

30 Days to Help Save a Life: What to Do in April
National Donate Life Month was established in 2003. Every day in April, people across the U.S. make a special effort to celebrate the tremendous generosity of those who have saved lives by becoming organ, tissue, marrow, and blood donors and to encourage more Americans to follow their fine example.

Make it known: I want to be a donor
~Register with your State Donor Registry, if available.
~Say YES to donation on your driver's license.
~Tell your family, friends, physician, and faith leader that you want to be a donor.
~Fill out and sign a donor card, have it witnessed, carry it with you.
~Tell someone: The need is great and growing.

More than 98,000 people are in need of an organ for transplant.
~Each day, about 77 people get the organ transplant that gives them a second chance, but 17 to 19 others die because they did not receive an organ transplant.
~More than half the people on the waiting list for a donated organ are racial or ethnic minorities. ~Chances of getting a transplant increase if donor and recipient share the same racial/ethnic background.

Get involved: Become a donation advocate.
~Encourage your company, association, union, or other organizations to which you may belong to join the Workplace Partnership for Life.
~Promote and support work site donation campaigns.
~Tell your local high school about Decision Donation, a school program that educates students about donation.
~Participate in local National Donate Life Month events sponsored by your local organ procurement organization.

I Know You!!

If you check out the People magazine with Beyonce on the cover there is an article in it about a family where all three siblings needed heart transplants due to Cardiomyopothy. Well, the Teenager I talked about in this Post HERE is Sam, the oldest sister in the article who got her transplant last April. Her sister Brandi has had hers now. Now only her brother needs one.

It's so crazy to open a People magazine and read about people you know... and about a subject that is so close to your own heart!

Utah Celebrates 1,000 Heart Transplants

Today Utah celebrated its 1,000th Heart Transplant! It's a wonderful achievement brought about by the collaboration of several hospitals and teams of Doctors working together to save lives.

But the real heroes? Our Organ Donors. Those who chose to turn tragedy into miracles.

So a BIG HEART FELT THANK YOU!! To our Organ Donors, Our Doctors, Our Hospitals, and ALL those who help spread the word.

Donate Life!

Kaidence's Poor Heart

Kaidence, Noah's Heart Transplant buddy, needs our prayers right now. Along with her mom and dad.

When she went in to have her Heart Cath there was a problem and when they took the biopsy it accidentally damaged a valve.

You can read up on the situation over at her blog.

As you all know, I am not fond of the Cath Lab. For a Heart Mommy it can be a very scary place for your baby to be. When I went to check up on Kaidence and I saw this news it completely broke my heart. Please remember to say a prayer for them. I do believe the Lord works miracles and that Kaidence's new heart can be healed.

Healed In Heaven

Healed in Heaven

Kynslee Lamb

September 24th, 2007 - April 15th, 2008

Today another Angel earned her wings and learned to fly. Kynslee was Healed in Heaven this afternoon when she went home to the arms of her loving Heavenly Father.

Kynslee was born with several heart defects but due to other health issues she wasn't eligible for a transplant. She has spent a lot of time in the hospital with unknown fevers and infections but the doctors never could figure out just what was wrong.

They finally let her come home on April 6th. They didn't know how long she would make it but at least she could spend the rest of her time at home with her parents who love her so much.

My heart breaks for Ben and Teea, Kynslee's mom and dad. Please remember them in your prayers.

Let's Try This Again

Noah has a Heart Cath scheduled in Denver for June 23rd. Yes, the very same day we went to Denver last year. (But as Kim mentioned, at least this time we can go with a smile on our face and not a look of horror)

When an adult has a heart transplant, they get cath's done a lot. But they are not without risk and one of the main problems we can encounter is the veins used to access the heart get full of scar tissue and close up. Because of this, babies and children who have heart transplants don't get caths very often. The only time Noah will get one is if they suspect rejection from his Echo (which he had once after transplant... this was when we discovered his insanely high blood pressure) and for routine care. His routine caths are at the one year mark and then every 2 years.

Well, this July will be one year so we are going back to Denver.

I didn't purposefully schedule his cath for the 23rd. I called Reggie (the cath lab scheduler) and asked him to reserve us a time so I could get plane tickets and he looked at the calendar, looked to see who was available (We get Dr. Pietra again YAY!!!), and said how about the 23rd? It worked so I said ok. It really wasn't until I was typing the previous post that the significance of that day hit me.

My mind told me it wasn't a big deal. Noah is healthy, things are good. But my heart wasn't listening and started beating a million beats a minute. I tried not to remember all the horrible experiences I had with the cath lab before (how sick Noah got, all the bad new I received, always having to wait alone) but I just didn't have that kind of control for a while.

I felt so stupid and weak. I knew I was over reacting. But it wasn't ME! It was my body. And I kept thinking about how after his post transplant blood transfusion we ended up back in the ICU in the SAME BED he had been in when we first got there. It's like we came around full circle... and here we are coming around again...

So, while yes, I had a moment yesterday, I am so thankful to be going back HEALTHY and coming home only a few days later. I am looking forward to them giving us the all clear for the first year precautions and knowing that our clinic visits will be reduced, his med level will go down, and we won't have another cath for 2 years.

When I think about it now... June 23rd, 2007 was a good day. It was the day my son went where he needed to be to get a new heart in only 12 days. June 23rd, 2008 will be a good day too because it will be the day they tell me his heart is still beating strong.

Noah's Heart Cath

Noah's Heart Cath has been scheduled. We go back to Denver on June 23rd... oh my goodness... I just realized that was the day we went to Denver last year...

I'm going to have to finish this post later.... Sorry.

When I Became A Heart Mother

If you have read Noah's Adventure before, then you know how much I LOVE this poem. I love it so much I have it posted in the side bar so I can read it every time I come to look at the pictures of my sweet Little Man (yes, I visit my own blog to see pictures of my own kids and I am not ashamed).

When I first read this poem (I found it on a random heart blog that I can't even remember and it didn't have an author listed so of course I "borrowed" it) my heart lept from my chest. I know that may sound a bit dramatic but it was as if someone had looked into my soul and felt my pain and my joy and wrote it in words in a way I was too desperate to adequately express. Even how it says another heart baby earned her angel wings... and I ran to my baby's side... I remember the day Onyx was healed in heaven and how I sat near Noah's side in the ICU and cried. I just held his little hand...... (is it possible for a memory to break your heart all over again?????)

Anyways, this poem was the written expression of my soul at that time. I always wished I could find the author and thank them for sharing such a beautiful thing.... instead, she found me.

The other day I received a post from Stephanie Husted. Her son Braeden was born with HLHS and is now doing well post Fontan. She wrote this poem on Mother's Day 2005. How it became loose on the Internet and then found its way into MY heart only God knows... but I do believe it was inspired. And I want to publicly THANK her for sharing her wonderful talent.

You may read this and think I'm making a big deal out of a small thing... but until you have been there you will never know how finding an expression for such a feeling really is a big thing. So thank you Stephanie. And many prayers and blessings to you and your family and your precious Braeden.

I'll Never Be The Same

I found a link to this article on my Sisters blog. It really got me thinking.

While I find GREAT peace and comfort in recognizing and remembering all the blessings we have been given over this past year and to see Noah and how far he has come and know what a miracle every day is... I also now know that once an illusion is broken it can never be made whole again.

My faith gives me a huge safety net. It gives me hope and courage and comfort and a determination to face each day come what may. But at the same time, I am only mortal and full of weakness. Weakness that I believe any woman inherits the moment she becomes a mother. And now, after all we have been through, that weakness feels magnified and at times I have to fight it from over powering me.

The article says: In times of crisis, the brain goes into protective mode, a kind of extended present tense intended to get you through danger without wasting energy or emotional resources. After all, there is no evolutionary advantage to worrying about the future when the future may never come. Once the danger has passed, though, you have all the time in the world to feel - and you do.

I've been told that because we came so close to losing Noah so many times, our bodies experienced the feelings associated with it and they don't really know they difference. It's like our bodies remember those feelings and think we did lose him. That's one of the reasons Post-Traumatic Stress sets in.

So while I thank my Heavenly Father EVERY DAY for my precious precious little man, I also remind myself of all the miracles I witnessed, of how I personally saw the hand of the Lord in the events that took place. I remind myself that in spite of all the pain that the past year has given me... it's also given me a life time of JOY. So once the danger has passed and you have all the time in the world to feel... I chose to feel joy.

And while it still might not be an easy road and I still fight weakness I am taking each day come what may.