Some Recent Pictures

Noah and Mommy at the Little America Buffet on Thanksgiving. And YES! We ARE wearing GREEN in honor of Noah's Donor and Organ Donation!

Thanksgiving Celebration at Nanny's and Poppy's

Christmas pictures. We just did them ourselves one day because Lilly was sick.

He looks so grown up.

He LOVED his Signing Time CD's he got for Christmas and kept giving Rachel kisses.

He HAD to sit in the Dora Chair during Christmas at Nanny and Poppy's. Every time we tried to take it away he would look for it.

During one of his recent fits. I think he is teething because this is happening a lot and is not like him.

Playing with his Daddy.

His new secret hiding spot for all his toys... and blankets...and pacifiers.

He takes this broom EVERY WHERE he goes.

Lilly and Noah were just posing for pictures today.

Please check out all of our Christmas Pictures over at Memoirs of a Mommy.

Sometimes The Pictures Do Lie

When Noah was born I had no idea he had a heart problem. I had anticipated something since I was being induced early but I wasn't worried. So when I was told he had a very worrisome heart murmur and Life Flight was on the way it was like being slapped.

During my first prenatal ultra sound I remember seeing his little heart. It struck me as being different than Lilly's had been. With Lilly her heart had looked perfect with a strong rhythmic beat. Noah's somehow seemed off. Maybe it was weaker or the beat was off. But it was enough of something to catch my eye. I asked the technician if his heart was okay and was told it was. Everything was fine.

Now I know it wasn't. I often wondered why it was caught early. Did they just not look closely enough? Was it something that even could have been seen?

I know it doesn't matter in the long run. The problem was there. It couldn't have been fixed even if we had known about it. We found out in enough time and thanks to a very loving family, Noah received a new heart and is doing great.

I can tell you though, that the next time we have a baby, I'm getting a fetal echo and doing all the testing. Why? Because I've decided that I don't like surprises. Not one bit. I would much rather prepare myself for what is ahead.

And yet, I know surprises will come. And I will face them with whatever strength is required. Because sometimes the pictures do lie.

Walking In A Winter Wonderland

Know what that means?

It means Noah is gave me the greatest Christmas present this year.

Noah is WALKING!!

He just gets up and goes. He is also crawling up and down the stairs as being downstairs is his most favorite place in the world. He is jabbering more with lots of gaaa's and laaa's and back of the throat noises. He likes to play bye bye where he waves and says bye then crawls around the corner. Then he comes back and does it again. He even comes up to me and says ickle while he tries to tickle me.

He went from nada to yada almost over night. It's wonderful to see him make such progress. He is SO full of personality.

I am so thankful that he is here with us. It's just one of those things I don't take for granted.

I love how he gives me kisses every night while I say prayers with him. He just plants them on me the entire time. I love how he face plants himself on the floor when he is trying to show off. I love how I can't go into the bathroom alone because he MUST come in and make sure their isn't water in the tub to play with. And I love how every time he has his shirt off he rubs his little budda belly all gentle like.

I remember last year we hadn't been home from Denver very long. Noah had just had surgery to remove his yucky gallbladder and appendix and we had been in and out of the ER and hospital. And, even though at the time I didn't know it, we were about to spend a few days in there again for RSV.

This year, he seems to be staying fairly healthy even though he does have a runny nose and a cough. His nebulizer helps the cough. I've been sick and Lilly is super sick and yet *crossing my fingers* he's done okay ever since his Fifth's breakout over Halloween.

He loves toys and I can't wait to see how he reacts tomorrow morning.

I am very mindful of his Donor Family this night. They are never far from my mind but I know this is only the 2nd Christmas without their precious baby. And while I still don't know who they are I grieve for their loss. I know the price that was paid to have Noah here with me.

So to our Donor Family, our Family, our Friends, and our Readers... Merry Christmas!

Much Love,

It's That Time Again

I am taking Noah up to PCMC tomorrow to get his first Synagis shot of the season.

I am so thankful he was approved for it again. He was so sick last year when he got RSV (even after getting the shots) that I hate to think how sick he might get if he got it again WITHOUT the shot this time.

And you all know that we haven't exactly been the example of health so far this year. Right now I'm just hoping he doesn't catch the bronchitis I came down with.

It sort of makes me laugh though... because I know people don't believe me when I say how often I am at the hospital. But we really do go there a ton. Doctor appointments, labs, follow ups, procedures... and that's just the icing on the cake.

It's all good though.


P.S. You probably all know this but just incase you don't, you can read all about our daily adventures (including updates on the rest of the family) over at my personal blog Memoirs of a Mommy. I try to keep Noah's Adventure to just the story of Noah's .... Adventure. LOL

A New Do

To go along with his new mood.

3 doses of antibiotic and he started eating, stopped trying to flood the house with poop, and best of all, he started laughing anf giggling again.

How quickly you forget those sounds. But once again, thanks to modern medicine and anti-buggie drugs we have the sounds of Angels in our house.

Noah also got a much needed hair cut. Don't worry if you like it long, it will be back before you know it. I'll post pics as soon as I'm online.

Oh and one more thing. To all of the followers of Noahs Adventure, thank you. Thank you for being interested in my warrior enough to want to read his story and for helping me spread the word on organ donation. Thank you so much!

This is what Noah's rash looked like before it got worse then better. At one point, the red part covered his entire body, face, head... everything. It didn't seem to itch and Benedryl didn't help at all... but it was sad to see him look that way.

See, I Told You

Noah loves Signing Time.

Noahs Mommy

I Am Overwhelmed Tonight!

As If my gratitude wasn't already swelling tonight... I just found out Baby Mia (see the link in my side bar as I'm on my phone and can't link) just got a heart approved. If all goes well she will be Prepped for transplant about 6 am.

Please keep her in your prayers as its a huge operation and she is very sick. But most of all, please Thank our Father in Heaven for giving her the strength to wait for this day. And a prayer for the donor family, as they say goodbye to their little one.


May they be blessed through the knowledge of the gratitude for their gift. The gift of life for Sweet Baby Mia.

Oh my heart is full.

A Reflection

June 11, 2007 Noah came into this life a very sick little boy. July
7th, 2007 he was given a second chance at life by someone I have never
met.

I never would have imagined that a child of mine would ever need a
heart transplant. When I was pregnant I would pray that my baby would
be born healthy. The words 'Birth Defect' are almost the worst thing
you can imagine. You never feel like it will happen to you. You never
imagine your own baby will actually need a heart transplant to live.

Now that I've lived it, now that I've watched my son become a warrior
and experienced the love given to us by Noah's Donor Family and so
many others, I am honored. I am honored to be Noah's Mother. I am
honored to be a Heart Mommy. I am honored to be blessed by Organ
Donation.

Most importantly though, I am grateful I am able to get to know my
baby. To hear his laughter and memorize his smile. He has made my life
better since the moment he took his first breath. And I will never
take this blessing for granted.

I hope his donor family knows that it wasn't just one life their
child's heart saved that day. By saving my son, they saved my life as
well. Not a day goes by that I don't hold Noah close and remember how
blessed we have been. I remember the sacrifice and silently thank the
mom and dad who don't have their child to hold. So I squeeze Noah a
little tighter because every moment we have is a gift.

Fifths Sucks

Noah broke out in the worst rash I have ever seen. Head to toe. I have pictures but I don't have my memory card with me at the moment.

The doctor thinks it might have been Fifth Disease. We did some blood tests and it does show his bone marrow has been suppressed more. This can complications for transplant patients because it reduces red blood cells that carry blood to the body and it also increases his chances of getting sick even more.

The Doctor said they have had another transplant kid get this virus and he had a really hard time getting over it but all in all Noah seems to be doing pretty well.

Our precious little Beckham isn't so lucky at the moment. He has a brain bleed and blood clots in his brain, juglar, and his leg (if I remember right). Please pray for him and his family. They are so precious to us and our hearts are breaking to see Beckham so sick especially after everything he has already been through.

Soy Yo!

Soy = An Alternative to Cow's Milk
Soy Yo = Spanish for It's Me!

I can't say for sure if the switch to Soy Milk has helped the poop issue. I think it's a possibility since he hasn't had any explosions recently but its still not back to 100% normal.

I had to take poop samples though. Which seems to have been a total waste as I STILL haven't taken them up to the hospital. I just haven't found the time nor the energy to make the 30 minute drive, go through valet and unload the kids, walk to the lab, drop it off, go back and wait at valet, reload the kids and drive back home... all for poop.

I should just throw it away.

Anyways,

Noah is wanting to walk everywhere. He can't do it without holding on yet as his muscle tone is still weak and he doesn't have the balance, but Shane saw him walk down the hall way the other day holding on to the wall. He also does the crab walk since he wants so badly to stand up and then can't. It won't be long now.

He is also FINALLY learning to communicate. He doesn't have a full set of consonants or vowel sounds yet but, and I kid you not, the other day I said "Thank you, Noah" and he said "..'come" (for welcome). He also will say bye bye and wave. He signs more and says and signs all done. He is also gesturing more so I know he at least understands the things I am saying.

Such a fun stage... minus the poop.

Another Poopy Post

No pictures this time though.

I was too busy trying to clean it up... and while I don't usually gag at baby poop, I gagged with this BIG TIME!

Noah has had some horribly awful diareah lately. I think it's going on a month now. He doesn't want to eat and just wants a bottle. At first I attributed the diareah to this but now I suspect he might have C. Diff again.

This morning was the worst so far. They have been pretty bad and always leaking but this time it didn't just leak. It EXPLODED.

I smelled it a room away. Knowing how his poops have been, I ran in to find him the moment I smelled it. But I was too late. He was sitting on Lilly's bedroom floor playing with a fake cell phone. There was poop in his hair, on his arms, on his face, up his back, on his stomach, down both legs, on the inside and outside of his clothes AND on the floor. I took him into the bathroom to take his clothes off and there was still enough poop in his diaper to require scooping with several baby wipes. (This was when I gagged.) I cleaned him up as best I could with a wipe and put him in the tub.

Unfortunately, there was enough poop floaties in the water to require me to clean the tub before I could allow Lilly to take a bath.

Totally sickening.

Needless to say, Noah has a Doctor appointment tomorrow and a Cardiology appointment on Thursday. I need to figure out whats going on and get him eating again.

I'm so sick and tired of poop.

A Letter Of Gratitude

It's been almost one year and 3 months since Noah was given the gift of life by an anonymous donor. My gratitude for this gift can not be expressed in words and I have found it difficult when trying to adequately express my feelings to his donor family.

I wrote the first draft of my thank you letter shortly after Noah received his new heart. But it's taken me this long to finally get it as close to right as I could. I wish I could have sent it sooner, but it was important for me to feel good about what I was sending.

So today, I sat down and finished it. It's now addressed to Donor Alliance and its sitting in my mailbox waiting to be picked up.

It has to be completely anonymous and if our Donor Family chooses to contact us after this they can through Donor Alliance. Then if we both want, we can receive each others contact information and have open communication. Sometimes the Donor Family or the Recipient Family doesn't want to share personal information. It's just too hard. If this ends up being the case I will understand. However, I do hope to get to know the people who gave us such a selfless gift. I would love for them to see Noah and see the joy he brings and how the legacy of their loved one lives on and will never be forgotten.

It may take several weeks, but if I hear back from Noah's Donor Family I will let you know.

Long Over Due

I know you have all been hanging by your toenails waiting to hear how Noah has been doing. Okay, so maybe not, but I'm sorry for the lack in updates regardless.

Noah is WONDERFUL! He is my chunky monkey yet, still on the bottom of the "graph" but whatever. LOL

He is crawling so fast now that he forgets he needs to watch were he is going. He crawled so fast the other day and whacked himself into the wall and crawled away with a HUGE bump and bruise on his forehead. Owell.... at least now you know he's just a regular kid like all the other kids with bumps and bruises, he's just cuter. (Chicks dig scars, right Poppie?)

He is also finally pulling himself up and cruising around the furniture. But he hasn't shown any attempts to walking between furniture. We are fine with that though since he does need to crawl longer before he starts to walk. This will help balance out his muscle tone.

He still isn't eating very well but his Early Intervention Occupational Therapist has been working with him on this. Thank goodness for Carnations. The little Magoo Poo LOVES chocolate.

Noah also loves taking baths and splashing in the water. Even toilet water *wince* But that's a story for another post.

One story I will tell you today...

I put Lilly in the bath tub so she could get ready for school. I needed to run downstairs and get some laundry out of the dryer. So I went in to my bedroom and told Shane I needed him to get up and watch Lilly and make sure Noah stayed out of the bathroom. "He likes to get in the water!!" I warned him.

So I ran downstairs. I was only down there for 3 minutes TOPS!

I came back up and Shane was holding Noah soaking wet.

Shane didn't listen and get out of bed fast enough when all of a sudden he hears a huge SPLASH!

Just as I predicted, Noah had crawled into the bathroom, stood up next to the bath tub, and leaned over to splash in the water. He got a little carried away and fell in. Shane came running and found him sitting in the tub ALL smiles and Lilly just laughing her head off. She thought it was SO funny he got in the tub in his clothes.

Now I know what your thinking... Kids drown that way!! What HORRIBLE parents! But I promise, we really do watch the kids especially around water (and the toilet). I promise!! So put those worries aside and you will see just how funny this really was.

But, needless to say, Shane lost all bath time watching duties for a while and to fix this problem, I now bathe the kids at the same time. Which brings on a whole new set of laughs.

All in all, Noah is doing great! He's learning to sign (Thank you Signing Time) and he's learning or at least TRYING to speak some new garbled words. But that works for me. He still gives tons of kisses and loves to laugh and play with his big sister.

Baby Mia would love to do the same thing but she is still in the hospital waiting for her new heart. So PLEASE keep her and her family in your prayers. And if you haven't registered to be an Organ Donor, please do so now.

God Bless!!

Great News!

Our precious friend Alan went home today!! Only two weeks and one day after he received his new heart.

Another wonderful example of answered prayers.

A Simple Request

My dear family and friends,

There is a little girl out there that is in need of your prayers.

Baby Mia is so very strong but she needs her new heart to come quickly. Her mom Mimi is with her at the hospital. While her brother and sister are at home with Daddy and miss her and their mommy very much.

As many of you know from seeing our experience with Noah or maybe even from your own transplant experience, the wait for a new heart can be a long and very difficult road.

I would be so grateful if every one who reads this would please remember to shower Heaven with prayers on their behalf.

It's my prayer that Mia will be strengthened and when the time comes, her Donor Family will make the selfless decision to turn their tragedy into her miracle. I pray that Mimi and John and their other two beautiful children will feel peace and comfort and be given the strength to bear all things. That the comforter will come to them and when they feel at their most weakest, buoy them up and carry them through their trials.

**You can visit Mimi's blog to read more about Mia or check out the sweet Help Baby Mia site that their friends set up for them.**

A Few Things New

A few quick updates:

Alan is doing better. He was weened off ECMO this morning and they hope to close up his chest tomorrow. (Please keep those prayers coming)

Noah is finally over the stomach bug and the associated few days of puking. He also now has a mouth full of teeth. They all just started popping in (even the molars). He keeps sticking his fingers in my mouth to see my teeth. I wonder where he learned that from? lol

He also got his very first at home clipper hair cut yesterday. His hair was SO long and unruly. So I bought some clippers and now it's short. It looks SO cute and he kinda resembles a little Glen Beck in a way. I have pictures so as soon as I can I'll post some.

He is also crawling and pulling to stand. I put shoes on him one day and he could do his little Terminator inspired pull so he got up and crawled.

Early Intervention now comes twice a month. His therapist is awesome. Which is so good because I hated to say good bye to his former OT, Sandy. But insurance was being a total... well I will refrain from sharing how I really feel. They were just being stinkers when it came to keeping their word.

So... more to come later. All is well here on the home front though.

Please remember to pray for Alan's healing and that Mia will get her heart soon.

Much Love!!

Alan Has A New Heart!

I still have no internet access, but if anything was worthy of the hassle of blogging from my phone, its this.

Our precious little friend Alan that we met on our last trip to Denver got the call this morning! He just celebrated his First Birthday and has been on the transplant waiting list for 90 days.

The call came late last night and they got the final approval about 4 am. He's been in surgery since 830 this morning and the heart arrived about 30 minutes ago.

The Doctor says its beautiful!

Please keep Alan and his family in your prayers as they embark on this new road of recovery. And also for his donor family, whose loss is more than I can imagine.



P.S.
Be a hero!
Be an Organ Donor!

A Song To My Heart

Trust in the Lord with all thine heart; and lean not unto thine own understanding.
In all thy ways acknowledge him, and he shall direct thy paths.

Proverbs 3:5-6

After my car accident, I tried to learn something from the experience. I walked away with many lessons but the biggest thing I learned was Gratitude.

Becoming a Heart Mother was a totally different experience but, again, I tried very hard to try and learn something valuable.

When Shane and I were faced with decisions regarding Noah's care and then having to decide where to send him to wait for his new heart, we felt like we were making decisions we couldn't make alone. Our son's life depended on these decisions and we would have to live with the outcome. That's a VERY big responsibility to carry.

Shane and I knew we couldn't make these decisions alone.

We went and found an empty conference room and along with my Dad and a very good family friend we knelt down together and asked our Heavenly Father to help Shane and I make the VERY important decision on where Noah needed to go. After we sought the inspiration from the Lord, Shane and I went and found a private and quiet area and started working through it.

Earlier in the day we had, for the most part, decided that Loma Linda was the place to go. But as we sat there talking it through, we could not shake the feeling that Denver was were he belonged. We asked, we got our answer, and the only thing left was to follow through. We sent Noah to Denver.

12 days later Noah got his new heart.

I know, without a doubt, that when I ask the Lord for guidance in the decisions I make, the things I do, the challenges I am faced with, He will be there.

When I ask my Heavenly Father to help me, I know He will. I take great comfort in knowing that as long as I am trying my best and asking my God to walk with me, He will show me the path.


This is a duplicate post from my personal blog Memoirs of a Mommy. But due to the subject matter, I felt it worth enough to share on Noah's Adventure as well. If you are a reader of both, forgive me for the repeat.

All New Things... Except The Ones That Are The Same

I took Noah up to PCMC today for his Clinic checkup. He didn't really need to go until October, but since he had been sick AND hasn't even been seen once since his cath in June, I thought it would be wise to have him looked at.

Everything looks great. His heart is perfect. No signs of rejection. No ear infections either (which really surprised me since he won't sleep or eat. He wakes at least 8 times a night and won't soothe himself. Very annoying. And the only thing he will eat right now is a slightly warmed bottle of half whole milk and half chocolate PediaSure... and no, he won't drink Carnations. I tried.) Dr. Norlin says if he doesn't get over it within the next few days, we should go see Dr. Samson-Fang. I'm hoping it's just a stage and he'll get over it. He's been on two antibiotics in the past 25 days. Had Strep and Staph... Oh Oh Oh And I found out he was on the type of antibiotic they use to treat MRSA. So I need to call and find out of that was the type of Staph that he had or not. I really hope not.

Anyways...

He also had a visit with the Allergist, where we found he has no allergies. He had a reaction to everything which meant he had a skin condition. I don't remember what it was called but I wasn't surprised with all his rashes etc. But since the results were not the same as the result to the Histamine then they weren't allergic reactions. He was given a Nebulizer and a daily asthma treatment with Albuterol as rescue. He has had these before as an inhaler with a spacer and we only used it when he was sick. But now we do it daily with the nebulizer and I have seen an improvement.

Then I took him to the Dentist. They said he is a bit behind with his teething but nothing to be too worried about. Even his gum growth (the extra over growth is caused by his immune-suppression med, Neoral) isn't that bad. Surprising, but good. I should have realized it would be okay since he isn't covered in hair anywhere but his head and body hair is a HUGE symptom of the med. They do want me to bring him back every 3 months for a while just to keep an eye on things due to his medical history. But his teeth look good. So unless he ends up getting a lot of cavities we may even get to skip the caps. But either way... Baby Teeth fall out anyways. My sister Jen had caps and they aren't that bad. So again... I'm not worried.

We also had Early Intervention come and evaluate him since Home Health Therapies are getting all messed up with crazy insurance companies where the left hand doesn't know what the right hand is doing (I'll explain later).

He qualifies... BIG surprise there. NOT. lol He is at about a 10 month developmental stage in Gross Motor (FINALLY!! We have worked on this SO hard) and about 8 month developmental stage in Cognitive and speech... meaning he doesn't talk or understand as much as he should. BUT progress is progress and I am NOT worried. Even if he stayed just the way he is forever he would still be my PERFECT miracle boy.

He has his hearing test next week then EI will send out a therapist twice a month. Then if we need to, I'll supplement with Home Health. But I work with him at home a LOT so I don't think it will be necessary. Then in a few weeks we have a follow up with the Allergist and an appointment with the Dermatologist. THIS appointment I am looking forward to. His poor rashes are just out of control and NOTHING I have helps. His skin is so sensitive and dry. It doesn't help that the meds are so rough on him and the fact that he still drags his belly when he does his Terminator impression (think one arm crawl/pull).

One thing that I am watching very closely right now is his ankles. Since his muscles haven't been very strong (thats one reason he can't crawl yet, his hips are too weak) but he is SO determined to stand, he uses the sides of his feet and grips with his toes instead of standing on the bottom of his foot. This has twisted his ankle out of the correct alignment. He still has full range of motion so it's not permanent or even serious right now. But might require braces or at the minimum a shoe implant to help him change the way he stands. Not a big deal.... I just want to keep an eye on it so I can work on it with him. I think having him wear shoes more often (even inside) will help. So I am going to invest in some good tennies. Only problem is he HATES things on his feet. He won't even sleep with socks on. I assume it has something to do with being in the NICU and having IVs in them and then having numerous pricks for blood draws every day. But he will get over it. If it means he has to wear shoes to play, I'm going to bet he learns quickly they aren't so bad.

All in all... Noah is doing GREAT!! Every day he exceeds my expectation with just BEING!! I LOVE his tongue kisses (he's so mature!! lol) even if it means I get his slobber all over my face. There was a time when I didn't know if I would ever have the pleasure. So he can slobber, oh I mean Kiss me any time he wants. The more the merrier.

And let me tell you... Watching him play with Lilly.... or Lilly running to give him kisses good night... there is nothing in this world that brings me more joy. I'm a mommy. And a mommy to the most precious, beautiful, amazing children I have ever had the joy of meeting. I am humbled every day to think the Lord trusted me enough to be their mommy. What could I have done to deserve such a wonderful blessing?