Monday, August 25, 2008

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.

Friday, August 22, 2008

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.


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?

Wednesday, August 13, 2008

Baby Mia Makes The News

Check out this wonderful video on sweet baby Mia and her family... then share it with all you know.

It's up to all of us to raise awareness for the need of Organ Donation.

Monday, August 11, 2008

Help For Baby Mia


Beckham's mom, Kim, contacted me a while back to tell me about a family who was expecting a little baby girl. Their little baby, Mia, was diagnosed in utero with the same condition as Noah, Critical Aortic Stenosis. She would need a heart transplant after she was born.

Mia is now here with her family and is very sick waiting in the NICU for her new heart to come. She is so precious.

As you can imagine, even with insurance, the costs involved with a Heart Baby are out of this world. With this in mind, some dear friends of Mia's parents created her a blog to share Mia's story and possibly help her family during this difficult time.

Please take a minute and read this sweet family's story. And if you are so inclind (and I really hope you are) maybe you could even help support them as they struggle to support their family. Even single dollars add up to unmeasurable relief.

Thank you from the bottom of my heart.

Sunday, August 10, 2008

A Quick Update

Posting the vacation update over at Memoirs of a Mommy took so long I don't have time to double post here. But if you want to see some new pictures of Noah and hear about his trip to the ER on vacation go take a look.

Tuesday, August 5, 2008

A Small Teaser

I have TONS of interesting tidbits to share from our recent vacation. Unfortunately, this is just a teaser post of whats to come.

But, rest assured, Noah is doing great and making progress.

And get this. . . At a restaraunt one night, the waitress looked at Noah and said, "What a healthy looking little man!" And she had NO idea he had been sick or had a Heart Transplant. She just thought he looked healthy.

It was music to my ears.

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