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.
Monday, April 28, 2008
I got a call this morning.
With Much Love, Crystal at 10:17 AM
Sunday, April 27, 2008
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.
With Much Love, Crystal at 10:45 PM
Thursday, April 24, 2008
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.
With Much Love, Crystal at 11:09 PM
Tuesday, April 22, 2008
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 firstname.lastname@example.org or 801-257-8723. Send comments about this story to email@example.com.
Organ and tissue donation by religion
Baptists: Donation is a compassionate and personal choice.
With Much Love, Crystal at 12:00 AM
Monday, April 21, 2008
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.
With Much Love, Crystal at 11:30 PM
Sunday, April 20, 2008
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!
With Much Love, Crystal at 12:02 PM
Tuesday, April 15, 2008
With Much Love, Crystal at 11:06 PM
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.
With Much Love, Crystal at 10:52 PM
With Much Love, Crystal at 10:40 PM
Thursday, April 10, 2008
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.
With Much Love, Crystal at 4:42 PM
Wednesday, April 9, 2008
Tuesday, April 8, 2008
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.
With Much Love, Crystal at 10:29 PM
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.
With Much Love, Crystal at 10:03 PM