My Beautiful Noah

So, do you think I should cut his hair or see how much longer it can get?

A PooPoo Update

Today, when I changed Noah's diaper, it had mucous and curds that were not very colorful. HOW IS THIS POSSIBLE??? He had an abdominal ultrasound on Friday and there were NO blockages!

Good Grief Child!!

I love you so much but you are such a mystery!!

A Rejection Scare

I am exhausted!

I had to take Noah up to the hospital today. We figured he had ear infections and to play it safe we figured it was best if we verify it rather than just calling in an Rx. Well, it's a good thing we did cause it wasn't his ears.

So we called Cardiology and Dr. Everett wanted to see him right away. So we (actually ME carrying Noah's heavy car seat, my purse, and the diaper bag cause the stroller was in the other car) walked over to PCMC. He had an Echo which took forever because they kept wanted to redo it different shots since they looked different than last time (of course THAT was nerve racking) then we had an EKG and blood pressures, then we had a chest x-ray.

Everything was fine. In fact, his heart wall is getting thinner finally. So it's NOT rejection. But it was a good 3 hours of silent panic.

So, since something is still definitely wrong, we did an abdominal ultra sound too. Just to make sure his liver was ok and there weren't any stones left behind. We checked his kidneys, pancreas, liver, bile ducts, etc. All was fine there too.

So, we still have NO idea what his deal is. But we are going to go check tons of labs and his med level again on Monday.

They test his Cyclo level using a different method now. And they say it's about 20% lower than how the old test would show but when we were doing both it was always more than 20% lower. Well, right now Noah is sitting at 80 on the new test. He needs to be 100-150 on the old test. So he is sitting at 100 if the new test really is 20% lower. But since it's normally a little more, we are going to raise his dose.

I know Denver likes to keep the med level as low as possible and Primary's keeps them MUCH higher and I don't want to raise them to PCMC levels, but I don't want him sitting on the lower threshold right now either. I figure it's better to be slightly higher during this first year then after that, go for the lower end. So we are changing his dose a bit. Which makes me feel better.

But once Denver shows his one year cath and echo are all clear, I am going to try and keep his meds at the lowest dose possible to avoid the nasty side effects and kidney damage.

Anyways... I'm tired, Noah was so tired he has been asleep since the moment I put him back in his car seat. And while we don't know whats wrong just yet, at least it's NOT his heart.

A Confession

I just love this little man SO much. And I think he is the cutest thing EVER!

When I am on the computer... working, bloging, researching, chatting, whatever... I always come back to this site over and over again just to see his cute picture in the header.

Does that make me silly?

Nope.

It makes me Mommy.

*Sigh*

Noah has been awake and crying since 2:30 this afternoon. I know he is tired but he won't stop crying or should I say SCREAMING long enought to fall asleep. AND I've given him Tylenol. I don't know what else to do... *sigh*

Weekend Update

Things ended up turning out very well...

Noah has NOT gotten any sicker and seems to be well managed with some Tylenol. He has started to eat a bit more and doesn't seem to be breathing as heavy but he still gets mad if the Tylenol wears off. So I'm sure he is still fighting something. But for now we are good.

This coming week should have been a no hospital visit week but since last week his Neoral (cyclosporin which is his main anti-rejection med) was too low, we have to have it checked again this week to make sure his new dose it enough.

Owell... at least thats a quick visit.

Thank you so much for all your thoughts, prayers, and supportive comments. It really is very comforting to me to know you are all out there keeping Noah in your hearts.

3 Times in One Week

We went to the hospital again today. Noah still isn't eating very well... actually he is hardly eating. He is also breathing very fast and is extra irritable. His sleep habits are all messed up too. He is napping much more but doesn't want to go to sleep at night. (that happens to me when I'm sick too)

Dr. Samson-Fang joked with us that he always seems to get sick on the weekend. She wasn't joking either. I can't believe for how well he is doing and how relatively healthy he is considering everything that we still end up at the hospital 3 times in one week.

Anyways, she isn't sure what his deal is. He's probably brewing something and we just have to wait until he gets sicker to find out. Which will probably be Saturday Night since thats the most inconvenient time.

He might have C.Diff again. He might have something up with his liver. He might have pnemonia. He might have something else completely. These were just the things that were on the top of the list. His ears surprisingly looked fine. There was still a little fluid behind one but it didn't look infected at all... and the weird thing??? Still no fevers. Dr. Everitt (his cardiologist) said he can still get infections even though he's immune suppressed but he never seems to get them, even with RSV and Lilly had a really high fever. Go figure.

Anyways, we'll wait out the weekend and hopefully he gets better not worse. But we have to go back next week regardless so we can check his level again since it was too low last week.

Congenital Heart Defect Awareness Day

As many of you probably already know, today is not only St. Valentine Day... it's also Congenital Heart Defect Day (the ending of CHD week). This is a very special and reflective day for us as Noah was born was several Congenital Heart Defects.

Here are some interestings facts about CHD's:

• It is estimated that 40,000 babies are born each year with Congenital Heart Defects in the United States alone.
• CHD is the most frequestly occurring birth defect and is a leading cause of birth-defect related deaths worldwide.
• Some CHDs may not require treatment, other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really cured.
• Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months or even years after. In some cases, CHDs are not detected until adolescence or adulthood.
• Many cases of Sudden Cardiac Death in young althletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

Despite these statistics, newborns and teen-aged athletes are NOT routinely screened for Congenital Heart Defects and a disproportionately small amount of funding is available for research and support.

Signs and Symptoms

Parents should be alert to the following symptoms in infancy:

• Tires easily during feeding (i.e. falls asleep before feeding finishes)
• Sweating around head, especially during feeding.
• Fast breathing when at rest or sleeping
• Pale or bluish skin color
• poor weight gain
• sleeps a lot - not playful or curious for any length of time.
• Puffy face, hands and/or feet
• Often irritable, difficult to console

Some children with CHDs may not have any symptoms until later in childhoos. Things to look for include:

• Gets out of breath during play
• Difficulty "keeping up" with playmates
• Tires easily/sleeps a lot
• change in color during active play or sports (looks pale or has a bluish tint around mouth and nose)
• Frequent colds and respiratory illnesses
• Slow growth and weight gain/poor appetite
• complains of chest plain and/or heart pounding.

If your child has two or more of these symptoms, talk to your pediatrician about a referral to a Pediatric Cardiologist! Click Here for more information.

Since Noah was born with Critical Aortic Stenosis and an Abnormal Mitral Valve with Significant Regurgitation, his CHDs were unable to be fixed. Instead, he required a Heart Transplant for a second chance at life. So in bringing awareness to CHDs we also strive to bring awareness to Organ Donation. Please visit the National Transplant Society website and the Donate Life America website to learn more about Organ Donation and to sign up to become a Donor. Please don't take your Organs to Heaven. Heaven knows we need them here!

And a special Thank you to Noah's Donor Family. Who during a most dificult time, chose to donate life and gave Noah a new heart.

A Huge Relief

Noah's appointment today went great! His liver tests all came back normal. His heart looks great... there is NO CoArch, his EKG was normal, and he wasn't upset when they pressed his liver. So maybe it was just gas or something.

So Noah continues to do really well. His next appointment will be in 3 1/2 weeks. That will be the longest stretch between appointments then we have ever had. I wonder how crazy I will be making myself by then??

This past weekend I wouldn't allow myself to think about todays appointment. I didn't want to get all worked up for nothing. And now that I know it was nothing I am really glad I didn't.

But Thank you for your prayers and support.

Tomorrows Visit

So tomorrow I will be taking Noah to PCMC first thing in the morning to check med levels in addition to checking his liver function. Then, we'll do his regular cardiac check up... echo, ekg, etc. Hopefully everything is ok and this Liver thing was just a random fluke that has already resolved itself. Either way, I will update once I get home.

Thank you for your prayers though. I can't tell you how much I rely upon them to help me stay calm when I am worried about something. Not to mention that I know they have and continue to work miracles for my little man (chubby cheeks and all).

Have a great night! I'm off to bed.

Waiting for Monday

I Spoke with Emily (the Transplant Coordinator) this morning and after she discussed with Dr. Everitte. They decided that if Noah looked or acted sick then I would need to bring him in today. But since he seemed ok, we are going to switch are weekly appointment from Thursday to Monday. Then we can check his med level, check his liver function, and get his echo and EKG.

I really hope it's nothing, but it sure can be unnerving. But I guess this is just the road of a transplant. Every little cold can be something bigger, every infection can lead to rejection, and every unexplained pain could be a result of heart function. I assume with time I won't get SO worked up about it because we'll have many "false alarms" under our belts but for now, it's always a bit scary.

I'll definately post an update as soon as I know what they say. But I don't think we'll have lab results back until Monday evening or even possibly Tuesday.

Todays Hospital Visit

Today Noah went to see Dr. Samson-Fang for his next Synagis shot. The shot part was easy. Of course he cried a little. But I think it was more from having to be held down than the actual shot because as soon as I picked him up, he stopped crying. (He doesn't like to be manipulated...just like his mom.)

What was interesting was what happened before the shots. Noah had been sleeping in his car seat when we got there. The time came to weigh him so I went to get him out and could tell he had pooped. Very stinking. So I pick him up and hold him upright against me so I can lay him down on the counter. As I lay him down I see yucky poopy diareah all over his leg and the only onesie that I brought. Then I look down and there was poop all over my boob. On my shirt of course. But it wasn't just a smear. There was actually a good deal of poop on me that had to be scooped off. It was VERY nasty. So I cleaned it up but then I was too stinking to wear it so I took it off and just wore my jacket as a shirt. Unfortunately, Noah had to wear his stinky onesie home but I did try to clean it up as much as I could.

The next turn of events might end us back in the hospital tomorrow. When the Dr. was doing his physical, he started crying when she pushed on his liver. Normally this doesn't bother him at all. The only time it has ever hurt him was when he had a blockage due to his gallstones. So her hypothosis was it could either be a missed GallStone, a random Virus thats in his liver, or a backup of fluid from his heart and lungs (He had this before he received his transplant since the Aorta was too small to push all the blood out so it backed up into his lungs and liver). So that just gave me a HORRIBLE thought.... I was told in Denver that Noah had a CoArct (a narrowing of his Aortic Arch near where the new heart was sewed to his exsisting Aorta). *remember the scary I hate the Cath lab post? But lately PCMC hasn't been checking it because the way they do their echo's they couldn't show a significant Coarch so they stopped looking for one. But if he does have one and it's getting worse, it could cause the fuild to back up and flood his lungs and liver and lead to heart failure..... Oh... gonna need a zanax tonight.

Anyways... It's probably nothing, but I have to call Cardiolody tomorrow to see if they want to see him right away or if it can wait till our schedule appointment on Thursday. Either way we will be checking his liver function labs.

Oh... one last thing. He was upset earlier because he was tired and I had to wake him up for meds... and as he cried I saw two little teeth trying to pop through. They seem to come and go since the Neoral thickens his gums and makes it harder to teeth. So maybe they will pop through this time... or maybe we'll have to wait.

The New Design

It took me a while to change my mind but I decided that I wanted a new look for Noah's Adventure. This new look is very symbolic of how things have changed since when the blog began.

I started this blog at the beginning of June. Before Noah was even born. Back when we had no idea what the future had in store for us.

I feel like we have come such a long way. I remember anticipating Noah's arrival with great excitement. I couldn't wait for him to join our family. When he was born my Joy was overwhelming. But then it was clouded by a pain I had wished I would never have to endure.

The days following were very hard as we struggled watching Noah suffer. As we watched random and rare set backs hinder his progress. But the days brightened as Noah improved.

And here we find ourself back to our regular life. It's different that we thought it would be with Noah's limitations and all his Dr visits. But I wouldn't change it for the world.

But in honor of Noah's progress, I thought it was time to update and change his website.

I hope you enjoy it and continue to stop by and check on his progress. I find great support through blogging and all the kind and support comments that everyone posts. So THANK YOU!

Another Burning Bum

Noah is doing well. The antibiotic seems to have really helped. He has a few more days to go to make sure they stay clear though.

One problem though... It brought back the really acidic poop that is burning holes in his poor little bum. I am trying everything and its just not working so we are back to the Lyticain cream and the Ilex. Only problem with the iLex is it makes his bum cheeks stick together. I try really hard to put the vasaline there so it won't but it doesn't help. I wonder if that will keep him from being able to poop is he needs to?!?! ;)

But he really is doing so well. You just can't tell all that he has been through just by looking at him. He also has more personality than I have ever seen in a baby his age. He honestly thinks he is funny. He does stuff to make me laugh and then starts laughing himself. Or he will cock his head and give you this look than slowly desolves into a little grin and then he just bursts out laughing. It's the cutest thing I have ever seen.

I just adore him. He brings me SO much joy. And even though the past 8 months has been hard, I wouldn't have him any other way. I love that he is so special. That he is my miracle. I wish I could take away his suffering. But since this is the road we have all been called to walk... I am honored to be a Heart Mommy. Especially since I'm the Mommy to a BEAUTIFUL Heart Baby.

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.