Something Was Off

Shane saw it too. Even though Noah should have been getting better, he seemed to be getting worse in some ways. Something wasn't right. As a Heart Mommy (or more specifically, a Transplant Mommy) you can imagine what thoughts race through your head. The Big Naughty "R" word!!

Luckily we had a follow-up appointment with Dr. Samson-Fang yesterday. She wanted to see him after being released from the hospital. Here is what we found:

While the suction is keeping his nose clear and for the most part that is cleared up, his lungs still sound bad. The wheezing is worse and he still needs the O2 at night. So we did the nebulizer (a breathing treatment) and it seemed to help a tiny bit so we have started his Albuterol inhaler again in addition to the steroid inhaler. Hopefully his lungs will get better.

We also found that since he had been released from the Hospital 4 days earlier, he had developed 2 very nasty ear infection. One ear has lots of puss and is really red, the other has a retracted ear drum and has fluid behind it. So he's now on an antibiotic which hopefully will clear things up fast.

Dr. Samson-Fang asked me if he had a fever at all. But he hasn't. Then last night I realized of course he hasn't had a fever. You get a fever when your immune system is fighting off an infection. If you don't have an immune system... you probably won't be having a fever either.

Anyways... the Tylenol is helping and he is also getting numbing ear drops so we can make sure his behavior returns to normal (to help rule out rejection). And I think all is well. We do have another Cardiology appointment on Thursday to check meds and have an echo. So we can make sure everything is ok then.

I don't want to jinx us... but I think we are all finally on the mend from this nasty RSV virus!

The Day I Became A Heart Mother

I found this poem while surfing the web. I don't know who wrote it so I can't give credit. But I think whoever wrote it must have looked through a window into my heart and wrote the words they found there. (Posted in Green in honor of the donor who saved Noah's life.)

One day my world came crashing down,

I'll never be the same.

They told me that my baby was sick.

I thought, "Am I to blame"?

I don't think I can handle this.

I am really not that strong.

It seemed my heart was breaking.

I have loved him for so long.

I will not give up on this child.

I will listen to your advice.

I will give my son any chance.

No matter what the price.

I will learn all that I need

To help my baby thrive.

I'll even use that feeding tube.

My child must survive!

Will he need a lot of therapy?

Will he gain the needed weight?

Please God, help me do this.

As I accept our fate.

When the monitors beep at night,

it serves as my reminder.

How many parents would love that sound.

Tomorrow I will be kinder.

As another Angel earns his wings,

I run to my baby's bed.

I watch him sleep for quite a while.

I bend down and kiss his head.

I cry for the parents whose hearts have been broken.

I look to You wondering why?

Oh Lord, I just can't know your ways....

no matter how I try.

And yet, I trust you hold his life,

and guide us through each day.

My mind says savor each moment he's here,

but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room,

to sitting by his bed.

From wishing for a good nights sleep,

to learning every med.

From wondering, "Will he be alright?",

to watching him reach out his hands.

With every smile my heart just melts,

despite life's harsh demands.

For all who see that faded line.

I look to them and smile.

You see my child is loved so much.

I would face ANY trial.

That scar I trace with my finger

(It's the door to his beautiful heart).

God must have known how much I'd love him

(Just as He loved him from the start).

A heart mom is always a heart mom.

Now wise beyond her years.

For those who have angels in heaven,

Our hearts share in all of your tears.

Every day I will try and remember,

I was chosen for him (and no other).

I will always embrace that beautiful day.......

When I became a "Heart Mother".

The Bridge Builder

An old man, going a lone highway,
Came at the evening, cold and gray,
To a chasm, vast and deep and wide,
Through which was flowing a sullen tide.
The old man crossed in the twilight dim;
The sullen stream had no fears for him;
But he turned when safe on the other side
And built a bridge to span the tide.
“Old man,” said a fellow pilgrim near,
“You are wasting strength with building here;
Your journey will end with the ending day;
You never again must pass this way;
You have crossed the chasm, deep and wide—
Why build you the bridge at the eventide?”
The builder lifted his old gray head:
“Good friend, in the path I have come,” he said,
“There followeth after me today
A youth whose feet must pass this way.
This chasm that has been naught to me
To that fair-haired youth may a pitfall be.
He, too, must cross in the twilight dim;
Good friend, I am building the bridge for him.”

~Will Allen Dromgoole’s classic poem titled “The Bridge Builder

Immuno-Tolerance: Could It Happen?

Check this out! This could be just the beginning of wonderful advancements for the world of transplants.

Australian girl switched blood type after transplant:

SYDNEY (AFP) — An Australian girl spontaneously changed blood groups and adopted her donor's immune system after a liver transplant, in what doctors treating her said Thursday was the first known case of its type.
Demi-Lee Brennan was aged nine and seriously ill with liver failure when she received the transplant, doctors at a top Sydney children's hospital told AFP.
Nine months later they discovered she had changed blood types and that her immune system had switched over to that of the donor after stem cells from the new liver migrated to her bone marrow.
She is now a healthy 15-year-old, Michael Stormon, a hepatologist treating her, told AFP. He said he had given several presentations on the case around the world and had heard of none like it.
"It is extremely unusual -- in fact we don't know of any other instance in which this happened," Stormon told AFP from the Children's Hospital at Westmead.
"In effect she had had a bone marrow transplant. The majority of her immune system had also switched over to that of the donor."
An article on the case was published in Thursday's edition of the leading US medical journal The New England Journal of Medicine.
Brennan's mother Kerrie Mills described the recovery as "miraculous" while the patient herself told a news conference that doctors had given her life back to her.
"I just can't thank them enough. It's like my second chance at life," Brennan said.
Doctors who treated Brennan are interested to know if the case could have other applications in transplant surgery, where rejection of donor organs by the recipient's immune system is a major hurdle.
Stormon said it appeared that Brennan may have been fortunate because a "sequence of serendipitous events", including a post-transplantation infection, may have given the stem cells from her donor's liver the chance to proliferate in the bone marrow, where blood cells develop.
The task now was to establish whether the same sort of outcome could be replicated in other transplant patients, he said.
"The challenge for us now is to try and figure out how this occurred," Stormon said.
One possibility is that the series of events she experienced all weakened her immune system enough for the stem cells to migrate to the bone marrow and proliferate, Stormon said.
These factors include the particular type of liver failure she had, a post-operation infection with the virus cytomegalovirus, and immunosuppressive drugs.
"To try to replicate that is easier said than done," Stormon said, but added the case could still potentially be of crucial importance.
"The holy grail of transplant medicine is immuno-tolerance. She exemplifies that this can occur."

Got Suction?

Yesterday morning Noah's Dr came to see him and she asked me how I felt about going home tomorrow? My response? "How about today with a suction machine?" She said OK! YES!

So they ordered us a suction machine and we got to go home. Problem? Well, the wonderful *sarcasm* home health care provider that said they would be bringing us a suction machine, called me later that night and said they wouldn't be sending one after all because they didn't have one. My two options would be to try waiting it out or going back to the hospital and be readmitted. (For $250 mind you!) I was NOT happy. Then the guy asked me if I had given a bulb syringe a try.....

Yes, I ALMOST reached through the phone to slap him.

Now, I was nice and even understanding but I was NOT happy.

Anyways, I begged that they would bring me one as soon as they could and put us at the top of the delivery list. And they did. We got our suction machine around noon this morning. I was shocked! Absolutely shocked at how much junk I was able to get out of his nose. Yucky doesn't even begin to describe it.

But rest assured, Noah is doing well. The Lord continues to bless him and sustain him and give him the strength he needs to overcome all he's been called to endure. He is such a little fighter!

Thank you for all of your support and prayers.

In the Hospital Again

This will be brief because I'm writing this on my iPod which is nice but not very easy.

Noah was admitted to the hospital today due to his RSV symptoms.
He hadn't been doing very well today so they told me to bring him in. I will give the whole story later but for now just know he is ok and could be much worse but with Noah its always better to play it safe. He could be a magician with all the tricks he has up his sleeves. But its most likely we'll be here a few days or we could go home tomorrow. Time will tell. But for now, I am very grateful he's doing well enough to avoid the PICU.

Thank you for your prayers! I'll let you know how things go very soon.

Bad News

Noah has RSV.

PICTURES!!

My cousin (actually my mothers cousin) is a truly gifted photographer. THANK YOU Angie for capturing the sweetness of my precious babies.

Check out some more of the pictures here.

*Courtesy of Sweet Memory Garden

I Did It!

I finally wrote my first draft letter to Noah's Donor Family. This was a huge step for me. As I have grieved for their loss, I have struggled to find the right words. But after some very helpful advice (Thanks Kally!) I realized all I needed to say was thank you! So I have my first draft. It will need some work as most extremely emotional things do but now that the first step has been taken, I know I can do it.

Noah's Progress

I'm sorry for the lack of updates lately. I've been reading all my usual blog reads but just haven't felt the desire to post my own. I guess I've been a little wordless lately. (and if you know me or read my blogs you know this is rare.)

Anyways, I wanted to let everyone know how well Noah is doing. He rolled over for the first time the other day. Stomach to back (we are still working on strengthening his tummy muscles). But he hasn't done it sense. I'm sure he's just waiting for the right moment. He's always been one to find just the right moment to do things... so stay tuned. I'm sure he'll be walking one of these days just to shock me.

Today, he finally found his feet. I have been working so hard to try and get him to realize they were there and this morning I looked down and he was holding his foot! (Without me showing him how!) So that's a fun milestone.

We also had my wonderful cousin Angie come and take pictures of Noah and Lilly the other day. As soon as I get them back I will be sure to post them. She takes the most beautiful pictures. The ones she has taken of Lilly are so precious to me. Check out her website Sweet Memory Garden.

One last note, thank goodness for Synagis. (The $1800 shot) We thought Lilly had come down with the flu. She had a temp of 102.5. So we took her to the hospital to be tested because if she did, we would all (especially Noah) need to take Tamiflu to prevent us from getting it or at least help us not get as sick. We all had flu shots so I was stupefied to think how she would have gotten it. Well, the test came back negative. YAY! Then a few hours later we found out that one of the other tests in the panel was positive.... RSV! Lilly has RSV. So, as I try to confine Noah to his room and spray my entire house with Lysol (THANK YOU Lysol for killing the RSV virus!) I just keep praying he won't get it. I've even put him back on the pulse Ox monitor at night just to be safe.

Such is life I guess.

Healed In Heaven

Healed In Heaven

Tadhg Michael Kilgore

October 12th 2007 - January 9th 2008

Shortly after Tadhg was born, he was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). He was placed on the Nation Transplant Waiting List on November 5th, 2007. Unfortunately, and with much sadness, Tadhg new heart never came. He passed away in the arms of his loving Mother and Father the evening of January 9th.

I came to know of Tadhg and his family through my new dear friend (and cousin) Kim Scadlock (Beckham's Mother). We both had so much in common with Michelle, Tadhg's Mom, that my heart was instantly open to them. I found myself checking Tadgh Blog every day hoping and praying that their miracle would come. For some reason, it never did.

This brings back so much pain and heart ache in remembrance of the other babies we came to know and love in Denver who also passed away. However, in tribute to Tadhg, his Uncle wrote a beautiful poem for him about how it isn't a story cut short. Just because the story wasn't a novel doesn't mean it wasn't finished. It is so beautiful and touching. And for me, it not only calmed my heart in Tadhg's passing, but also for Onyx and Vinney and all our other Angel Babies.

One thing this event has brought forth to my mind (and heart) even more than it already was, is the oh so important need of becoming an Organ Donor. When your time on this earth is over, "Don't take your organs to Heaven! Heaven knows we need them here!" It breaks my heart to think of all the babies, and sons and daughters, and mothers and fathers, who pass away because their miracle never comes. There are so many myths about Organ Donation. Just because you have opted to donate does NOT mean that your doctors are not going to try absolutely everything they can to save you. But it does mean that if you die, your death can have purpose and meaning, and your tragedy will become someone else's miracle. Your legacy will live on in those who YOU saved.

Poor little Tadhg couldn't wait any longer and went back home to Heavenly Father. He has now been healed. As his Uncle says... His story continues.

Please choose to Donate Life!

Don't take your organs to Heaven, Heaven knows we need them here!

As for me.... I want to be remembered for the Life I Gave as well as the life I lived.

And I will always wear green in honor of the donor who saved my sons life. Thank you with all my heart to our precious Donor Family.

Please visit Tadhg's website to read the beautiful tribute his uncle wrote.

A Great Start!

It has been a Great Start to what will be a Great Year!

Noah has been doing wonderfully! He continues to eat more and he is always happy! Tomorrow is our last weekly transplant clinic. As long as everything continues to look great, we get to switch to every other week. And I am very excited about this. It means he is making progress and his heart is doing good. And now that he has healed from his Gallbladder surgery, his OT and PT will be starting again. So I expect to see him rolling over and maybe even crawling very very soon!

And when I do, I promise you WON'T have to wait for pictures!

I also had a wonderful insight to start this year off. As many of you know from reading my posts, Shane and I have had a hard time coming back to PCMC after Noah had such great care at TCH Denver. You see, the Lord confirmed to us that we were to be in Denver. We knew we were where we were suppose to be so we had faith in the treatment he was receiving and in the Doctors who were treating him. Coming back to Salt Lake was difficult because we didn't have that trust anymore. I kept thinking that they would need to prove their competency and earn my respect and trust. This kept me pulled between places. PCMC and TCH. Who do I trust? Who do I listen to? Where do I go for advice? You can imagine the stress and unrest this caused me.

Well... I realized that I was having a difficult time with everything because I wasn't trusting the Lord to continue to guide Noah's care and provide for him. I never questioned it in Denver because I knew he had sent us there. But what I've realized now is that we are still where we need to be. I know that Heavenly Father wanted us to buy this house and live where we are now. I know Primary Childrens is a wonderful Hospital. And I now know (remember) that the Lord continues to provide for Noah and continues to guide his care. I know I can trust the Doctors and Nurses at PCMC to take good care of Noah because the Lord is with us and showing is the path.

What comfort this has given me. What a huge relief it is to be reminded of my Faith. It's kind of funny how it's almost easier to have faith when times are tougher. But I am thankful for the reminder and the relief it has given me. I know that regardless of which Doctors are taking care of Noah, he is in God's hands. Just has he has been from the beginning. And yet, we have been VERY blessed to have such wonderful Doctors, both in Denver and here in Salt Lake.

Much Love,
~Crystal