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.

Today's Clinic Visit

Noah went to PCMC for his Transplant Clinic again today. And ALL IS WELL!!

His echo looked great, his heart and lungs sounded great, his blood pressure is good, his profusion is good, he is gaining weight, all the nurses LOVE him and his hair.... do you want me to go on? His cyclosporin level is perfect. On the new testing its 92 which is anywhere between 120 and 180 on the old testing. Denver wants his level between 100 and 150 so I think we are close enough. Now, we don't go back for 4 weeks!!!

His poop is also normal now. I don't want to jinx him, but he hasn't had a mucous poop in FOREVER! He's eating baby food solids and doing so well I am thinking of starting him on some finger foods and seeing how he does.

He is rolling over and standing up great, but he refuses to sit up. He has the muscle strength but is lacking the know how and coordination. So we are uping his OT visits from once a month to once a week. I still haven't heard from his PT since January and I even requested a new therapist but haven't gotten an update.

He is saying dada and lots of ga's but that's about it... beside his screaming. And yes, I said SCREAMING! He doesn't cry (all the time) but he does SCREAM if you are not paying him the attention he thinks he deserves.

One nice treat at his clinic appointment today was I finally got to meet Kaidence and her Mom Shauntelle today. We happened to run into them and can I just say... Kaidence is SO cute!! She is adorable in the pictures on her blog, but she is even cuter in person (She takes after her mom who is beautiful)!! I wanted to squeeze her... but being a heart mom I know all about HANDS OFF!!! Shauntelle was also so very nice! It was such a pleasure to finally meet them. I wish them the best of luck as Kaidence has been having some issues with her white blood count. OUR PRAYERS ARE WITH YOU SWEETIE!!

I also got to see Monica and Mackenzie again (our Heart Transplant buddies from Denver. They were at the RMH with us.) Mackenzie is looking SO good. She promised she would come over and play with us sometime soon. And it was wonderful to chat with Monica. I really like her. And her hair looked so great today! She has the best natural color!

So, that's the Noah update. He really is doing SO well.... I couldn't be more grateful to my Heavenly Father for blessing us with so much. And to everyone for your continued prayers and faith on our behalf. It really has helped us through this past year and given us the strength to make it through life's bumpy road.

Much Love to All,

Anyone Want To See Some Pictures?

It Came

Noah FINALLY has a tooth!!

I'm a Slacker

I'm a slacker. I still haven't taken any pictures yet. But since I have the rest of the week off work, I will get some taken and posted this weekend!

So you know, though, Noah is doing great! He's eating like a champ. Once I started mixing in fruits and veggies with his oatmeal... he will eat them. So I figure I will give them a try by themselves again soon.

He's rolling all over the place and when he's on his tummy he kicks and kicks so fast... if he could just roll into a ball instead of balancing on his tummy he would be crawling in no time.

He is also totally in love with Lilly. The other day he was crying because I left the room (oh, yes.... separation anxiety at it's finest) and I asked Lilly to go give Noah kisses. She went in and kneeled down next to him and started talking and he just burst out laughing. It was SO cute!

He got his most recent and hopefully final synagis shot on Monday and he has his 9 month well baby check up tomorrow. Can you believe it? Yesterday Noah turned 9 months!!!

I promise to post pictures soon.

A Haircut

According to the recent poll, more people thought that Noah's hair at least needed a trim. So that is what he got. Yesterday I pulled out the scissors and trimmed his hair (big sissy Lilly got a trim too)!

Stay tuned for pictures.

A Different Milestone

Yesterday was a different milestone of sorts... Noah went the whole day and only pooped once! All day I kept waiting for the inevitable stinky pants... but it never came.

Even when he woke up this morning there was no poo.

But after he ate, he finally went. And get this... it was the FIRST brown poop he has EVER had!!

I guess we are a little too excited about poop at out house.

Noah is Doing GREAT!

No news is good news right?

Yes, this time it is. Noah is doing great! He started acting normal again and eating like a champ. He also started rolling over both directions. He LOVES his new found freedom. He also realized he could use his voice for more than just screaming. He is now starting to jabber all day. And like to do it REALLY loud whenever I am on the phone.

I posted new pictures of him over at Memoirs of a Mommy. Go check them out!


P.S. I just went in to get Noah up from his nap since he was yelling. And I instantly started to laugh... He had pulled his pants down around his ankles. Lilly can't even do that by herself! The little turkey!

Baby Binaca

Noah has very bad breath.

I don't know if it's due to his meds or his nasty formula (he still uses and will only eat the Nutramagen) but either way... it's gross. Sometimes I can't quite figure out what it smells like but yesterday it smelled like the cheese you get in the handi-snack cheese and crackers. Quite foul when it's coming from your child's mouth!

I've tried wiping out his mouth (gums and tongue) with a wet wash cloth but it doesn't help. I would think maybe he had thrush but I don't see any sign of it. (Or I would give him the Nystatin he used to LOVE).

Shane says we need to Binaca the Baby... I can just imagine how well Noah would like that!

***UPDATE***
I just put a little Nystatin in his mouth and guess what magically appeared??? A white rash all over his tongue! He DOES have Thrush!! I am totally grossed out. But hopefully this means his breath will get better.