Noah's Adventure

An Interesting Realization

2009-11-09T00:19:00.000-07:00

When Noah was born and then in the hospital, both pre and post heart transplant, I took a lot of pictures. But as cute as he was (and still is I must say) I never look at them. I honestly don't remember even opening the folder. Not even once.

I guess I remember it enough still to not need a reminder. Plus, there are some things I never want to see again.

The Swine Flu Vaccine Journey

2009-11-07T16:04:00.000-07:00

A few weeks ago the H1N1 shots began arriving in my state. I've mentioned before (at least I know I did on my other blog) how important it is for our family, and especially Noah, to get our flu shots every year. So I did my best to get him protected from this virus.

I called every clinic and doctors office, I called the Health Department, I checked online. So when I heard the Health Department was going to offer a mass clinic one Saturday morning I made sure we would be there.

If you follow me on Twitter or read Memoirs of a Mommy, then you know how that mess (absolute chaos) turned out.

The clinic opened at 7 am. We woke up early and got there at 6:30. It was cold, dark and raining and yet the line still went down the street, up around the corner, down that street, and then roped back and forth in the parking lot. We jumped out of the car and in the search for the end of the line, I asked one of the employees how many shots they had available and was informed it was under 2000. The problem was, this line had about 5000 people in it.

People were yelling at each other and fighting with line jumpers. There was no organization. I knew we were not getting a shot that day. Besides, I didn't want to risk being near all those people in such awful weather. It would be just our luck to wait and try to get a vaccine and go home sick instead.

So before I even found the end of the line, I turned the kids around and went home. Turned out to be the right decision because I heard an hour later they ran out of shots and everyone (including the people who got there at 4 am) were turned away.

Unfortunately, effort doesn't always keep the germs away and a week later, Lilly got sick. Her symptoms hit her so fast and she got so sick, I was really worried. I took her to the Urgent Care the next morning and her Flu test came back positive. Since the seasonal flu hadn't reached us yet, it was given as a 95% chance as being of the H1N1 variety.

I was worried about Lilly and she was really quite sick and had a hard time breathing but I panicked over the thought of Noah catching it. His asthma and damaged lungs... while not as bad as some (he really does so well most of the time) it's still dangerous for him. Plus the increased risk of rejection when his immune system gets revved up. It was not an enjoyable experience.

Noah's transplant coordinator wanted to do everything we could to keep Noah from getting sick, which included trying to keep the rest of us healthy so his chance of catching it wouldn't be increased. So we all got on Tamiflu that same day. That drug is fabulous. It makes you feel awful (and has the possibility of some nasty side effects) but it helped Lilly get better quite fast, kept the rest of us from catching it, and kept Noah Flu Free!

I still felt it was important to try and get Noah his vaccine. Even though he was exposed, it's just not the same. So I continued to call around and try to track one down. Unfortunately I was turned away empty handed every time.

Then on Thursday I got a call from his pediatricians office. They had a very limited number of shots available and one was waiting for Noah.

We went up there first thing Friday morning. I went to check in and we weren't on the appointment list. I explained that the nurse had called me the day before. She replies, "Oh, you are on the hush hush super VIP list!!"

Turns out, the University Hospital Pediatric clinic who has many Doctors working there and who I am sure have THOUSANDS of needy patients, was given 10, yes TEN H1N1 vaccine shots.

TEN!!

To say that I am thankful the office thought of Noah and saved one for him would be the understatement of the year.

That done, a huge burden has been lifted from my shoulders. I still need to find one for Lilly. Since the actual flu strain wasn't confirmed, I don't want to take any chances. So the hunt continues.

But this whole mess has just confirmed my feelings that socialized medicine is not the answer. It's obvious that in the hands of the government, things are poorly ran.

I hope that I don't have to make any more phone calls this year to tell anyone we have exposed them to contagious germies. That was not fun and carrying the burden of possibly causing someone elses sickness is not fun. Of course it was unintentional, I would never purposefully want or try to get someone sick. We are so careful about that. But just as Lilly catching it in the first place was an accident (probably from school) anyone we may have gotten sick was an accident too. But I am still sorry.

I really hope we ALL get our shots and stay healthy here on out.

The 10 Month Wait Is Over: A Trip To A Geneticist

2009-09-08T22:02:00.004-06:00

Today the wait to see a Geneticist came to an end.

When I made the appointment, in November '09, Noah was not walking, not talking, having a difficult time learning, and the diarrhea.... Oh the diarrhea.

I emailed my concerns to his pediatrician, Dr. Samson-Fang (who we love), and she agreed that there were enough items of concern to warrant a visit to a Geneticist.

I called to make an appointment and was told the next available opening was at the end of September. An entire 11 months away. So I made the appointment and we started the wait.

A few weeks ago they called and told me the Doctor was going to be out of town that week and rescheduled us to today (a whole 3 weeks early).

So bright and early this morning Noah and I climbed into the car and made the 30 minute trip to Primary Children's Medical Center (the fantastic Children's Hospital here in Salt Lake).

After a 10 month wait, I was hoping not to feel rushed or discounted and I wasn't disappointed.

We talked with the P.A. for 40 minutes then the Doctor came in. Here is what we discussed:

Based on a family history of Left-Heart abnormalities (both my cousin and my grandma), Noah's Congenital Heart Defect (CHD) is most likely just a "runs in the family" sort of thing and NOT part of a larger syndrome or disease.

The Doctor did not believe Noah fit the mold of any other diagnosis. There is a reasonable explanation for everything from his heart defect to his gallstones.

We discussed his diarrhea and how it seems to get worse with high fat or sugar intake (even whole milk... but not cheese). Celiac Disease didn't really fit so he mentioned Cystic Fibrosis. He didn't think Noah had C.F. but to just rule it out, we decided to get the test done anyways.

I don't know much about C.F. I've never researched it or read about it. I thought it was just a lung disease. But I guess the diarrhea and fat absorption fit. Since the test is non-invasive, in-expensive and gives a definite result, we decided to get it done. It's very simple. They just stimulate sweat production then test the sweat for the level of Sodium Chloride. As everyone with C.F. has high sodium chloride in their sweat.

He also said that Noah received some genetic testing as part of the basic newborn testing and also due to his immediate health concerns. Everything was normal. There is a new test that checks and diagnoses more items but given that Noah doesn't seem to have any disorders and his first test was negative, the Doctor didn't see the need to retest.

All this is good news! I doubt the C.F. test will be positive, but it's always nice to rule things out.

The Doctor also told me, that based on our family history, that I, along with my siblings and Lilly, should all be seen by a Cardiologist to rule out any abnormalities. Left-Heart abnormalities do run in families (like Bicuspid Aortic valve, which is what we suspect my Grandma and Cousin had, Aortic Stenosis, CoArctation of the Aorta, etc.). A Bicuspid Aorta doesn't always cause a murmur in children and can go undiagnosed. So we should ALL have a work up for it.

Because of this family history, I have a 1 in 25, or 4% chance that one of my future children will have a CHD. This is exactly what I have been told by Cardiology. If either I or any of my siblings end up having an abnormality, then my chances go up a lot.

So it's nice to know that Noah's history isn't smaller pieces of a bigger picture. Kinda cruddy to know that this family history of heart defects (which I did not know about until recently) is as prevalent as it is.

When the sweat test results come back, I will post again. But I will honestly be very surprised if it's anything other than negative.

BUT, if it is, Noah has proven time and time again that he will raise above it and do it with a smile.

The 4-11.R

2009-08-25T19:24:00.005-06:00

Last year, when Noah went in for his Cath, I think he was fighting off an infection. We had decided to fly to Denver that year and as luck would have it, we had a lunger on board.

I spent the entire flight cringing as I imagined all the infectious germies spewing forth as we breathed in the recirculated air.

While there were no complications, Noah still was weakened and sick afterward.

This year, we drove and only had our own recirculated air to breath. And while the day was long we did eventually get to our destination. And lucky for us, the night manager at the Ronald McDonald House in Aurora stayed up to check us in.

Noah's cath this year went exceptionally well. He didn't want to sleep and had to be given everything under the sun but as soon as he was allowed, he was up and running.

I was so relieved that everything went well and Noah had the strength he needed for the procedure.

I've been (not so) patiently waiting for the biopsy results to come back. I suspected that if all was well Alison would just text me. So I was a bit suspicious when my phone rang.

Turns out, it wasn't the "big fat zero" I had hoped for. His rejection level is a 1R (formally a 1A). This means there were rejection cells present. However, it's such a low level that it's not treated and it's not really classified as a rejection episode.

I was a little bummed, if I am being honest. Is it better than full-on rejection? Yes. Is it the ZERO he had last year? No.

Alison came to my rescue (as usual) and put it into perspective for me.

Last year, his level was Zero but his pressures where way too high and not good. This year, his pressures are perfect but his rejection level is a 1R, not even high enough to need treatment.

After the cath yesterday, I asked Dr. Pietra (he is FABULOUS!) if Noah's chances of developing Acute rejection (the type of rejection you think about in reference to transplants vs Chronic Rejection like CAD) was lower because he had his transplant so young and he said it was.

It's very possible that 2 years from now (yep, you read that right.... next cath is TWO years from now) his rejection level could be a zero again. For me, it's sort of hard to not think of it as progressive... like once the rejection cells are there they always will be and will just keep adding more until the rejection is serious or treated. But that's not the case.

So while it wasn't exactly what I had been praying for, it's still wonderful news and an outcome that I am extremely grateful for.

I want everyone who reads this to know how much I am thankful for your support and love. I know you have been praying for Noah and my family and there are no words to express my gratitude.

May the Lord bless each of you with the blessings you are in need of.

Cath Lab Update

2009-08-24T17:20:00.007-06:00

Noah's cath went fabulous!

As I mentioned before, he really fought the sedation. But he is now resting comfortably... which is a good thing since he has to stay laying down for at least 4 hours post procedure.

The pressures measured in his heart are wonderful. Any signs of the stiffness we found last year, are gone. There is no sign of Coronary Artery Disease (which is thought to be a form of chronic, long-term rejection). The biopsy results won't be back until tomorrow around noon. But seeing as how everything else was good, it would be surprising if the biopsy results were good too.

So, no additional medications and we don't have to come back for 2 years this time.

Thank you everyone for your thoughts, prayers and support. It's so reassuring to know that you all care about and love my little man.

A Cath Lab Update

2009-08-24T14:52:00.003-06:00

Noah is having his Heart Cath right now.

He resisted tons of sedation. To fall asleep and stay that way, he needed 2 doses of Versed, 2 doses of Demerol, 1 dose of Benedryl, and a dose of Ketamine.

He is one tough cookie.

Alison (Noah's Transplant Coordinator) is back there with him and sending me text message updates. (Have I mentioned lately how much I adore her?)

Her last update said the pressure levels were good and they were moving from the left side on to the right.

I'll post more later as I get updates. If you are interested in real time updates, follow me on Twitter or visit my Memoirs of a Mommy and read my Twitter Updates there.

Thanks for your support... I feel it.

Headed Back To Denver

2009-08-19T15:01:00.002-06:00

It's that time again.

On Saturday we leave for Denver. Noah's 2nd annual (eventually only every other year) Heart Cath Lab visit is set up for Monday.

I know I said I wasn't as nervous. And I'm not. But, truth be told, I am still feeling the worry though.

I'm starting to worry about his Cyclosporin level. Since I'm on a "truth telling roll"... I haven't sent his level in to be checked in a while. He's way past due. So I'm worried his level won't be high enough... but then I worry that maybe it's too high since he does seem to have some thrush as the moment. (Small beans... I know.)

I'm worried about finding rejection. I'm worried the stiffness he had last time will have gotten worse since he hasn't been on any heart meds for the past year....

I'm mom. I'm worried.

I recognize that we are in a very good place. So many of the people we have met and love, and even those who we just follow on their blogs, are having rough times. So many are so sick. So many are taking hit after hit. I remember what that felt like. So even pretending like our current situation is half of a big deal feels so very wrong.

I would have cut off my right arm to be where I am now. I would have laughed at myself for worrying over small beans... and I would have fiercely scolded myself for not getting his level checked on time...

Yet, to everything there is a season... and it seems so much easier now to be worried over small beans when I don't have BIG beans weighing me down.

So, off we go.

We are visiting the Denver Aquarium while we are there since it's the coolest ever. Maybe we'll even hit the zoo. But we get to see old friends, walk old roads (and hospital hallways), and eat a little Boston Market.

My prayers are that his Cath will go well. That Noah will be strong and sustained. That Dr. Pietra's hands will be guided and his knowledge, sharpened. That Noah's heart and body will be one, with no rejection... no stiffness.... no complications.

Honestly... I feel so very fragile sometimes. I hate the worry. I hate the unknown. But I also know that all I have to do is get on my knees and ask Heavenly Father for the strength I am in need of. He never lets me down.

I felt very strongly after Noah was born that God DOES give us trials we can't bare. BUT He also gives us the strength we need to see them through. So while I feel weak and powerless and even fearful of the unknown... I also know that whatever may come, He will give me the strength I need.

So now, as I have many times before, I must ask for your help.

Please keep Noah in your thoughts and prayers. Sometimes there are blessings that God wants to give us but can only be given if they are asked for. So, please... help me ask our Heavenly Father for the blessings that Noah needs.

Dodged Another Bullet

2009-08-12T17:48:00.003-06:00

Today, Noah and I went to Primary Children's Medical Center (the local Children's Hospital) so he could get an in-depth eye exam.

It's been one of those things that has always tickled a nerve for me. Being that he was so low on oxygen before transplant, on O2 therapy for a long while post-transplant, and all the hoopla surrounding his blood transfusion reaction (including the insanely high Blood Pressure), I was worried that his tendency to run into EVERYTHING was more than just toddler recklessness.

Luckily, he passed his dilated exam with flying colors. Because of a family history of Amblyopia, he does need to be seen again in a year, but I can totally deal with that.

The Doctor did ask me if he had ever needed to have an MRI of his brain before (no idea why he asked) and it got me to thinking...

I remembered that awful Heart Cath day when Dr. Pietra decided to take Noah in to check out the ectopy and found out his blood pressure was lethally high, even for an adult.

They rushed him downstairs for a brain scan, fully expecting to find a devastating bleed.

Talk about losing it... that was the day my sanity started cracking (and I'm just barely getting it back together again).

He dodged a bullet that time. No brain bleed and no significant rejection (although he was treated and the ectopy and blood pressure resolved). Now it would seem he has done it again. His hearing is great, his eyes are great, and every single person who sees him is shocked when they learn he had a heart transplant.

I am not saying this lightly. I know just how very different things could be. Every single day Noah is healthy is a blessing. Every test he passes, every medication he gets to avoid... it's all nothing short of amazing.

And while being kept awake hours on end, every single night to the "mamamamama" screams and then starting the day out every morning by 5 am playing dodge-ball while I'm trying to sleep in bed, is not on the top of my list of favorite things... it's still a million times better than any alternative.

You know, when I was pregnant with Noah, I used to wonder how my life was going to change. And this is going to sound horrible, but I wondered how it was going to be possible to love him as much as I already loved Lilly.

I looked back, now, and laugh at how much I didn't understand.

Still Here

2009-07-29T13:52:00.004-06:00

I don't know why I have such a hard time updating Noah's Adventure lately.

Maybe it's because not having anything to update makes me feel like we are just a typical, non-special health care needs family.

Maybe it's because Noah is doing so well that his updates just get mushed in with regular family updates over at my other blog.

Or maybe I have just been so distracted with other things that I'm a huge slacker with blogging.

Yeah, that sounds more likely.

Noah is doing really well though. So well, in fact, that while counting our blessings and remembering our miracles, I still seem to always be "looking over my shoulder" for the sky to be falling again.

Noah may be immune-suppressed and we try to keep him away from germs and stay disinfected but I do a better job at exposing him than I do at living in a bubble. We are home bodies at that helps a lot. We don't really have many "hang out in real life" friends so that helps too. But we still go to amusement parks, aquariums, the zoo, and even the mecca of germies; Chuck E Cheese's.

I know it's naughty and I don't want it to seem like we are ungrateful for the wonderful gift Noah was given. I have many thoughts on the subject. Deep, thought-provoking, self-reflection sort of thoughts. I haven't decided what my story on that is yet though.

I just know that we have been so insanely blessed. I can't even begin to imagine what my life would be like without him.

Some recent Noah News:

He celebrated his 2nd birthday and his 2nd transplant anniversary.
Shortly after the Dr started to suspect he might have more than just a speech delay (apraxia) he said his first full word Bah-Gul (aka bottle). He still says just the first sound for most things but he's figuring it out. He did say "I tackle" when he jumped on my back yesterday. And he also said "Not yet" when I asked him if it was time to leave the park.
We went swimming at my grandparents house on the 4th of July. As we were leaving we caught him laying on his tummy in the garage LICKING the floor. Thank goodness my grandpa's garage is cleaner than my kitchen. Unfortunately he still got a bit of a rash on his upper lip. But I suspect it's related to the rash behind his ears. The staph and strep came back. So while the antibiotic (oral and topical) did help a bit, it hasn't cleared up completely and we will need to take a trip to the Dr's soon.
He has his next heart cath in Denver this August. I'm not nearly as freaked out about this time around. All I needed was one cath without an awful outcome. When I got that last year it really helped calm my fears. Of course, it's still worrisome. I am afraid that's when the sky might fall again but I am visualizing a completely negative (Zero Rejection) result. Plus, I want to make sure the stiffness is getting better.

I promise I will do a better job at updating. Sharing Noah's story and helping to raise awareness for Organ Donation and for Congenital Heart Defects is still such a huge priority for me. I just needed to get to a place in my life where I can do it and I think I am almost there.

Thank you for sticking around. I do read many of your blogs (if I don't, then you need to leave me a comment so I know to come visit). I may not comment a whole lot, but that is on the needs improvement list also. So hopefully you will see me around here and over there.

Much Love,

Happy Birthday Noah!

2009-06-11T23:49:00.004-06:00

My Sweet Boy,

Oh how Mommy loves you. It's been two years since you entered my world and it's been the best two years. While times haven't been easy for either of us you have brightened my world and taught me more about being a mother than I ever could have imagined.

You give me loves and hugs and kisses. You have taught me about faith and hope and sacrifice. You make me laugh. Every single day you make me laugh.

You are brave, my little one. Don't ever lose that. Continue to face every challenge in your life as if there was never an option to fail. Remember to find humor in the simple things and you will always be able to keep a smile on your face when times are hard. Most importantly, give thanks to your Heavenly Father every day for the blessings he has blessed you with. You have been a miracle in the lives of many and have been given so many blessings already in your life. If you remember that all that you have been given is a gift of a loving Heavenly Father, he will continue to guide you through your journey on this earth.

These are things that you have helped teach me from the moment you took your first breath. I am a better person because of you. You are my hero, little one.

Never forget that I love you more than words could ever say and I always will.

Happy Birthday my Heart Warrior. Love is the reason you're here.

Your Mommy

Clinic Check Up

2009-06-04T20:57:00.003-06:00

Noah had his first clinic appointment in 4 months today. He passed with flying colors.

Everyone was pleasantly surprised at how good he looks. His hair stealing the show as usual though.

When we got to Primary Children's Hospital Noah seemed to get a little anxious as we walked in. All it took was walking past the lab to start the melt down. This continued on for some time but luckily he calmed down enough while looking at pictures on my BlackBerry for him to get a good echo done. Probably his best in a while since he's cried through the last few I remember.

The echo results looked good, his Dr check up looked good, and we'll send his labs to Denver on Monday. So we are set for another 4 months. Except we'll cut it short and make our trip to Denver in August for his Cath.

So, just a quick update. But I thought I would pass along the good clinic news.

Noah, Beckham, and Evan

2009-05-24T00:21:00.004-06:00

I was told it would happen. I didn't ever think it would and it seems that is has.

Life has gotten to a point post-transplant where I don't have to blog every day to keep you updated on things. But I am SHOCKED that I went two whole months this time. It's a wonder anyone even reads this blog still. I do hope that I still have readers. Because as I get things mended in my own personal sphere, I plan to revamp Noah's Adventure a bit. I have a lot of ideas in the works.

But I digress.

A few posts back I wrote about how I took Noah into the Peds office but had to see a Doctor we were not familiar with. She said sounded okay. Then I took him to our PCP's office since I was going to be there anyways. He said Noah sounded ucky but to wait it out. If it wasn't better in a few more days then call and he would give him an Rx. Which we did. It cleared up his runny nose right away. But that darn cough and raspy breathing were as bad as ever.

A few days later, almost on a whim, I took him to an Urgent Care. What I wanted was an X-Ray of his chest but I didn't want to drive all the way to Primarys to see the Ped then have to go to Radiology... YaDa YaDa YaDa.

The Dr listened to him and was surprised he sounded so sticky and rattley. And sure enough, the Chest x-Ray showed pneumonia. So poor little Noah got two yucky antibiotic shots. One in each leg. Then he was on a 10 day course of oral antibiotics. Sure enough, that stuborn cough went the way of the high way. But if it hadn't of been for that cough I never would have know he was sick. He wasn't acting sick at all.

Now I'm starting to have my suspicions on how long he really was sick though. Cause right now, this kid is eating like a CHAMP!! Which he has never done. He still gets his bottles here and there but his main nutrition is starting to become FOOD.

He is also trying to communicate better. In the sense that he's realizing that there is a way to show us what he is thinking or wanting. Whether it be words (ma, da, pu aka for puppy), gesturs, grunts, pointing, or even throwing a fit until I guess the right answer. It's all wonderful because it means he is starting to understand that there is such a thing as communication. There is a way for Mommy to understand!!! YAY for both of us!

He's isn't growing much or gaining weight but he is starting to look different. Outgrowing the baby look and change into a toddler look. I see his face change every day. I need to take and post more pictures. Because he really is the cutest and sweetest thing. He still gives tons of kisses and hugs and now that he says Ma he says it all the time. He likes to come over to me and point to me and say Ma over and over again so I don't forget that he knows who I am. I LOVE it!!

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Our sweet dear family the Scadlocks are having a rough go of it right now.

I've posted in the past how Beckham had clotting and bleeding problems referred to as ITP. (I as in Idiopathic because no one could figure out the cause.) Well, he recently developed a new symptom. Kool Aid blood. Seriously, it's not really called that. It just looks like it. Now, in addition to his platelets being affected, now his red blood cells are being attacked. (Sort of like being DEATHLY anemic.) I'm sure I am total butchering this description. So you would be better off heading over to Our Baby Beckham to read it straight from Nate and Kim. But in short, he has now been diagnosed with a very rare and chronic condition called Evan's Syndrome.

Evan's Syndrome is so rare that there really isn't too much information out there in relation to a Pediatric Heart Transplant patient with Even's Syndrome (ES). So the Dr's have their hands full trying to figure things out and tracking down experts in the fiels of ES. As of now, Beck is back in the hospital. He has had several blood transfusions and is now on IVIG and high dose Steriods.

The Steriods are giving Beck some major Roid Rage. Kim says he scowles and "baby cusses" (not real cuss words) at everyone who walks past him. Ordering them around and being all grouchy.

You know, seeing Beckham going to through SO MUCH. . . and his poor family. AARRGGHHH!!! Beckham was born right after Noah. They both went through the same things. They are both strong little fighters. It created such a special tie to the Scadlocks for me. I love that little guy like my own son. It pains me that they are so far away and I can't help. It breaks my heart to see him so sick. And as a mother my heart breaks for Kim. Who is torn between caring for Beckham and caring for Gwen. Not to mention how a mommys heart is pierced every time her child is sick let alone super sick and needles involved.

Kim and Nate, if you happen to read this, please remember that we love you. You are not only our Family Family (I don't care how distant, it's still family) but you are also our Heart Family. We will do anything to help you through this time. (Kim, my invitation is an open door.) We are praying for all of you. May the Lord give you the comfort and the strength that you need to accomplish was is set before you. And may the Doctors be inspired in the correct course of actions to take to get Beckham on his road to recovery... and hospital free for a long long time!!

And to my Dear Constant Reader: Please send good thoughts, vibes, what ever it is you do, to the Scadlocks. If you pray, please shower Heaven with prayer on their behalf.

Beckhams bruises caused by his ITP

Knock Knock

2009-03-26T01:48:00.000-06:00

I'm knocking on wood.

I think Noah's nose may have ceased leaking for the first time in almost 3 months.

He had been sick for so long I was starting to worry. Being immune suppressed and having a donor heart can make for a less than stellar combination when mixed with nasty viruses and bacteria.

The diarreah? Still visiting. It doesn't ever go away. It just gets a bit better. This kid has had 3 non-liquid poops in his entire life. I went back to soy milk after 2 bottles and his foam poop cleared right up. I think it's the extra fat in the dairy that he can't tolerate.

He is making great progress on his speach too. He isn't saying more words really but you can see his desire to communicate and he tries. He surprises me each day with how much he really understands.

Today I tried to lay him down for a nap without giving him a bottle first (he gets several bottles of soy and carnations each day to make up for the food he won't eat). He adores his bottles and this made for one very upset and tired little man. He instantly started crying and saying Ba. I told him I would go get him one and he immediately stopped crying (for being able to instantly turn it off he sure sounds like it's a real cry). When I came back I asked what he had done with his binky and he point to the small space between his crib and the wall. I can't reach back there and I was frustrated. "Noah, why did you throw it back there?", I said. He looked at me, shrugged, and grunted something that really sounded like "I don't know." I chuckled. I couldn't help myself. When I picked him up to sit in the chair for his bottle, he raised both arms above his head excitedly said "Ya!". I tell you, he surprises me more everyday.

When he woke up from his nap, Lilly was in the bath tub. Some how I had the misguided idea that he could see water and not insist on getting in it. He immediately proceeded to try and take his clothes off while saying baa (for bath) over and over. When I wasn't quick enough for him, he let me know it.

He is doing ordinary toddler things and yet they are so extrodinary in every way. I can't help but see everything he does as a miracle. I'm sure he doesn't mind when he gets away with being a stinker.

Sick and Sick of Winter

2009-03-12T21:43:00.002-06:00

Noah has been sick since January. He just can't seem to shake it. It flares up, gets a bit better, then flares up again. We finally did one round of antibiotics last month and it helped enough to turn his snot from green to clear again but his poor nose is like a broken faucet. It runs and runs and runs.

What's weird, is that it seems to get worse after his synagis shots each month. This past week he got his shot on Monday. Tuesday morning he was sicker. By Wednesday morning, he was having such a hard time breathing that I hooked him up to his nebulizer and the pulse ox. His Oxygen saturation was about 89 and that's with very fast labored breathing. So I called the pediatricians office. Dr. Samson-Fang wasn't available but the nurse, Diane, said it was best to come in. So up to the hospital we went. Since we did the breathing treatment before we went, by the time we got there he was back up to 95. We saw a Doctor we have never seen before but she said he didn't sound like he had pnemonia and his ears were clean. So she sent us home.

It seemed like a wasted trip because he still sounds so awful when he struggles to breath that I have a hard time believing he doesn't at least have bronchitis. But, I also have a hard time trusting just any Doctor when they aren't familiar with Noah's status as a medical enigma.

Either way, we are doing his breathing treatments several times a day to help him breath. I also had to put him back on the oral Gentamyacin IV since his super stinky diarreah came back too.

Even though this has been a rough winter full of hard to kick germies, we really are very lucky and blessed. The germies we've had have been manageable from home. Our sweet Heart Cousin Beckham has been in and out of the hospital with low platelet counts. It's so bad, that he is now back in the hospital indefinately until they can get it back to a normal level. It's just too dangerous for him to be away from the hospital since he bleeds so easily and it doesn't want to clot. The poor little guy is covered in bruises. It breaks my heart!! Please keep him and his family in your thoughts and prayers.

A New Word

2009-03-03T23:03:00.003-07:00

Noah finally said (with some prompting). . . Ma!

It sounded like musical gold. He has only said it twice since then and both times with prompting but that's fine with me. He has to start somewhere.

Tomorrow I am taking him up to Primary Children's Hospital to meet with an Orthopedic Specialist to see about his leg turning out. His appointment is at 8am. They called and asked me to be there 15 minutes early. They claim for paperwork but I know better. The clinics don't even open till 8am. They just don't want me to be late. I don't blame them though. A 30 minute drive that early in the morning... if it wasn't for my insomnia and waking up super early lately I might actually be worried.

He's Out To Get Me

2009-02-25T00:45:00.005-07:00

If only I was joking.

Noah is out to get me. He is secretly (or not so secretly) planning my demise.

He is not even two (almost 21 months to be exact) and this kid already knows all about trouble. I don't know if it's because he is making up for being bedridden in the NICU and CICU for so long or because he's just a boy. I am sure that Lilly was not like this though.

Here is a small example of what the menace was up to today.

I find him in the living room. He has removed all the pillows off the couch, climbed up the back of it and is standing on the window sill, clutching the blinds that I have raise way above his head, as he licks (yes, licks) the window. I get him down. As I fix the pillows I hear a noise in the kitchen and then a crunching rapidly moving down the hall way. I go to Lilly's room to find Noah sitting on the floor with a bag of Doritos that he got out of the LOCKED pantry cabinet. I take the chips from him that then results in a screaming tantrum. As I put the chips away the screaming stops. I go into the living room to find out why, and find Noah standing on his tip toes grabbing my purse off the table and pulling it down.

One thing after another. Add to that no nap and 45 minutes of non-stop screaming while I was hoping he would fall asleep and you have one tired, worn out, and frazzled mommy.

I told you he was out to get me.

But I have to add a side note. As much as I would like to leave it at that and try and invoke some fellow mommy sympathy, I just can't. Because every time this little monster tries my patience or runs circles around me, I can feel nothing but complete gratitude that he is here to run circles around me. There was many moments when I didn't know if I would be blessed with such a pleasure. So even when I am tired and frazzled, I can't help but remember that I wouldn't have it any other way.

My life is so very blessed.

Praying For Gracie!

2009-02-23T19:54:00.001-07:00

Baby Gracie is 11 months old. Today she was listed for a 2 Heart Transplant in as many days. The first heart she received didn't start beating properly after it was transplanted.

This little girl has been through so much. She is now on ECMO while we all pray a new heart will come quickly.

Please pray for her and stop by her blog. I'm sure her family could use some supportive comments.

Thank you!

A Different Perspective

2009-02-10T01:34:00.000-07:00

The other day I was feeling a weight on my shoulders. You might know the one. I'm sure most Heart Mommies, Transplant Mommies and Daddy's too have felt it at one point along the road. The weight of knowing that it's never over. That it's not something that can be healed with an antibiotic or that is cured. It's a life time journey.

I'm fine with this.

It was the reminder of how short a time it might be that bothered me.

Hearing of Brandi's passing and of Kenzie's rejection really upset me. Not only as I grieve and pray for their families but also as I worry about what the futur may hold for Noah.

The fact that I almost lost him on several occasions never has a difficult time reminding me of that pain.

And then there was a light in the dark tunnel I was clouding myself in.

I saw a blog post on my (extended) cousin's blog. The same cousin I turned to when I learned of Noah's need. Because she had been there once. Many years earlier she was diagnosed with Cardiomyopothy and received a Heart Transplant.

Her post?

"Today makes 20 Years Post Transplant."

My fog lifted. My joy was not only for my cousin. It was also for Noah. (And Kenzie). Yes, there are some journies that are cut short. But then there are some whose journy is just beginning. Even with 20 years...

I don't know when Heavenly Father will call Noah home. But I know that he WILL full fill his mission in this life before he goes. He was given that promise.

So now, I just have to have faith. Faith that God's will will be done and then I have to pray... That it won't be done for 80 more years.

And hey, 20 years is a good place to start.

*Happy 20 years post transplant Kalli! That's a true testament to your strength, your determination, and your love of life. All things I hope to instil in Noah. I love that both Noah and Beckham have you to look up to. Because I know how truely we do need you!.**

An Update, An X-Ray and Some Sad News

2009-02-07T20:50:00.000-07:00

Noah's recent Cardiology appointment went really well!

We started out the day by getting to the hospital bright and early since he has to have his blood drawn 30 minutes prior to receiving his morning dose of Neoral. He recognizes what's happening now and he gets sad and cries but he is quick to be comforted and move on. He did so well he got a very cute white teddy as a prize.

Then his echo was next. This was the best echo experience since he was a baby in Denver and would just sleep through it. This time he drank some of his bottle, watched some cartoons, and played with my phone. I also taught him how to sign mouse. He thought that was neat. He didn't cry or grab at the wand and wires. I was very relieved because I wanted him to get a good echo so I knew the results would be correct.

Then his appointment was next. Dr Everett said he was doing great! He passed all the tests. His echo looked great. I still need to take more blood monday morning to send to Denver to check his med level but other than that we are good to go till our trip to Denver in June.

Next up was his synagis shot and checkup with Dr. Samson-Fang his pediatrician. I love her. She is so helpful and never makes me feel stupid for my concerns or questions and she is very helpful. He got his two awful and painful shots. Then was checked out due to his booger cold. No ear infections and it seems his breathing treatments are keeping his lungs clear. So he just has to wait it out. This is fine as long as its just boogers. So that is good. While we were there I also asked her to watch him walk. Noah turns his left leg out when he walks. I think this contributes to his lack of balance and I wanted to get her thoughts. As soon as she saw it she gave us a referral to see an ortho specialist and sent us for an X-ray of his hips. Better safe than sorry.

His X-ray turned out fine and he has the specialist app early next month to make sure he doesn't need a brace or something. Not a big worry. A brace or therapy should help if its not something he will just out grow. So more details on that after his appointment.

It was a very busy day but all in all it was good.

But now the bad news.
My good friend Monica (who I met in Denver and lives here in Utah) is back in Denver with Kenzie. Kenzie was sick for a bit and it turns out it was rejection. I don't want to share too much of their story without permission but I had to put a prayer request out there. Kenzie (and her family) are in need of your prayers and good thoughts. Please remember them for me.
While in Denver Monica also found out that our friend
Sam's little sister Brandi passed away this past December. You might remember me telling you about Sam. I first met her shortly after we got to Denver. I actually met her at the same time as Monica and Kenzie. Sam had cardiomyopothy and had just gotten her heart transplant. Her sister and brother also needed heart transplants. Their story has been featured in People magazine. Its rare for three members of the same family to all have this same disease and need a transplant. Well, about two months after we came home Sam and her family came back to Denver so her sister Brandi could get her transplant. Well, last December Brandi got sick with a virus and unfortunately passed away.

This is very sad for me and Monica. We both love this family. Their loss is our loss.

It's also a grim reminder. Even after things calm down and life gets easier you can't let your guard down. Transplant is a miracle and a gift from God. But it is also a road that has many ups, downs, and curves. Every day is a gift. Every single day!!!

Update and Recent News

2009-02-03T01:18:00.002-07:00

I'll get to telling the rest of my story from the previous post soon. For now, I wanted to let you all know how Noah is doing.

All things considered, he is doing GREAT!

He does have a cold right now. Some nasty sinus stuff that he is having a hard time beating. He is Booger Central at the moment.

But, he is signing more and more. (Thank you Signing Time!!)

He started signing Go today. He also regularly signs All Done (as he throws things in the trash, throws his food off of his high chair, or throws pill bottles out the front door), Please (when he wants me to turn Signing Time on) and More (when the episode of Signing Time is over and he wants to watch it again).

He also says Ba ALOT because he still isn't eating too well and wants a bottle because he is hungry. Thank goodness for Formula because it's the only thing that keeps me from worrying about his nutrition. What I do is add about 4 oz of concentrated lactose free formula to 4 oz of Soy Very Vanilla milk (instead of water) and he loves it.

He has a cardio appointment and his next Synagis shot on Thursday. If all is well, he won't need to go back until we head to Denver in June. YAY!!

I also finally got a referral for him to see a geneticist. I called to make the appointment and they can't see him until Sept 29th. Yes, September. How crazy is that?? I'm not taking him because I want to know what caused his heart defect. I want to take him to find out if he has some sort of defect that might cause things in addition to his CHD. That way I can plan ahead for his care and hopefully catch things early. If he has a diagnosis, it also might help me get better state funding for him.

He is still full of kisses (even if they are snotty ones, I take them) and he loves playing with Lilly. They two crack eachother up and laugh all the time. It's music to my ears. They like playing in the bath together. Poor Noah gets a bit picked on because Lilly likes to dump water on his head. Luckily he doesn't seem to mind.

The yucky part, is we are STILL on lock down. Even more than before since there seems to be a nasty tummy bug making the rounds. I have had to keep Lilly home from more things too just so she doesn't bring the buggies back. She is SO antsy to go outside and play. I sure hope Spring comes quickly.

But I must say, one of the funniest things going on in our house right now is Noah taking his asthma nebulizer treatments. We are up to twice a day since he is sick right now but that's okay with him. He loves it. What I usually do is put the mask on him and we sit in his rocking chair and I sing him songs. Well, not really songS. More like a song. He wants me to sing him Rainbow Salad from Signing Time over and over and over again. So we rock back and forth while I sing it to him. He loves it so much, that I catch him in his room sitting in the chair rocking and holding his mask several times through out the day. Makes me laugh EVERY Time!!

In CHD news, it's February again. Which means Congenital Heart Defect Awareness week starts on the 7th. So, I am going to try and post some informative posts over the next few days. Please help me raise awareness by adding the CHD banner and button to your blogs. Posting about it would be awesome too.

Noah wouldn't have needed his Heart Transplant if it wasn't for the Congenital Heart Defect he was born with. We need to raise awareness about CHDs, not just to learn more, but also so parents can learn to recognize the symptoms. It may just save a life. Either way, it's a topic near and dear to OUR hearts and for good reason. Please help me spread the word.

I will update again when I get the information back from Noah's tests on Thursday.

Much Love,

2009-02-02T20:45:00.002-07:00

The Beast and The Glass Box

2009-01-24T00:14:00.000-07:00

I've talked about The Beast before.

The night Noah went into his post transplant Cath I stared into its awful eyes and won.

Noah was back in ICU after receiving that ill-fated blood transfusion that gave him TRALI (Transfusion Related Acute Lung Injury). He was so sick and yet there didn't seem to be much explanation for his ectopy (unusual Heart Rhythms) or why they couldn't get good blood pressure readings. Dr. Pietra decided it was time for another Cath to check pressure and see if we could find some answers.

I already felt like my last thread of sanity was beginning to fray. I just wasn't prepared for him to get so sick after he had been so strong waiting for his new angel heart. It was such an unwelcome and unexpected turn of events, I was rattled.

Then, while he was in having his cath done I sat in the hallway. I tried peaking through the window to see if the atmosphere was calm or anxious. The nurses were wonderful and called me every hour to give me updates but if they were even a minute late, there I was peering through the window. As if that would tell me anything.

Finally, Alison (Noah's Transplant Coordinator) and Dr. Pietra came out to talk to me.

Turns out Noah's Blood Pressure is insanely high. Not just fatally high for a baby but fatally high for an adult. They were quickly wrapping up the cath and rushing him down to radiology for an MRI of his brain. The likelihood that Noah had a massive Brain Bleed was almost a guarantee.

I rode down the patient elevators with Noah and the rest of the team. Alison came along to be my liaison and keep me updated.

I remember stepping off the elevator and watching them wheel Noah into the imaging room and feeling this beast inside me.

It was angry and dangerous and loud and it was ripping at my insides trying to get out.

It was all I could do to keep that awful monster locked inside me. There is a saying that a person learns how strong they are when they have to be. I learned that night that I was much stronger than I imagined.

Alison came out to update me and the look on her face terrified me. But everything was fine. There was no evidence of any bleed or damage.

But that night I saw something inside of me that even now I feel like I can't completely control. I would be lying if I said it didn't scare me still.

I've come to find out that I'm not the only one who has met this monster. Who has felt it rip and tear up your insides as it tries to break free. Who has done everything in their power to keep it locked up inside so it doesn't break free.

Even now, I sense it sometimes. But that story will have to wait.

The Beast and The Glass Box: To Be Continued. . .

I Had To Share

2009-01-08T01:14:00.001-07:00

From 5 Minutes for Mom (I hope they don't mind me reposting this.)

January 7, 2009

4 Year Old Coleman Has Gone To Heaven

Written by Susan

I’m reading Coleman Scott Larson’s carepages update and I’m choking on a lump in my throat as tears well up…

You might be one of the thousands who have been following Coleman’s journey on carepages.com, or you might remember Coleman from our Blogs Can Change Lives campaign, or this might be the first time you’ve seen his photo… regardless of how long each of us have known Coleman, he has a message for us:

“Coleman would NOT want you to be mad at God.”

I do not know how Coleman’s mother can write with such courage… it must be God’s strength within her.

Here are some excerpts from her recent post called “Tears filled with Hope”.

“Coleman said long ago, “Some day I won’t need NO more meds or pokes, wight mommy?”

No more sweetie. You are free.

Today the world may have cried a river of tears for a little boy’s life that ended way too soon, but we believe Heaven is REJOICING over Coleman’s job well done.

Coleman was an amazing child of God and we were so honored to be chosen as his parents.

He left this world at 10:45 last night- he fought HARD until the very end, not wanting to give up, but finally letting go. He was a warrior and a hero our hearts will forever miss. We had the most glorious five years together- a gift we will never forget.”

Coleman’s mother tells this profound story… you MUST read this…

“One day Coleman heard someone say they were mad at God. He didn’t say a word, but later came to me with this complete look of disbelief on his face and asked, “mommy? did you hear them say they were mad at DOD? WHY would they say that?” He couldn’t even fathom the thought. Then he raised his little eyebrows and said, “well, I hope they don’t say that in PUB-WIC (public)!” and walked away. He knew there were some things he could not change, but HIS faith never wavered.

Lots of people have mentioned their anger toward God …how can He let this happen when so many people have been praying for Coleman? Why didn’t he answer our prayers?

I just can’t be angry at Our God who sent Coleman to us in the first place. Coleman was a child of God, WE were chosen to be his parents- and how blessed we were. Maybe my feelings will change, but like Coleman, I can’t imagine being angry at God. Would we have loved to have had more time with Coleman? YES! I want him back right now, but I know that’s the selfish part of me talking. I know I will hurt more than I can ever imagine in missing him… and I know I will have MANY days of heartache and anger, but my anger is over the fact we live in a world where we can do so much, but still do not have a cure for this horrific disease. Children are paying the price for that. More on that will come-

I guess what I’m saying is I know for a fact, Coleman would NOT want us to be mad at God. He taught us so much in his time here. His lessons will go on for a very long time. He knew where he came from and he knew where he was going. My heart aches for more time, but I’m SO thankful for the time we got with him, and we know we WILL be with him again. God doesn’t always answer our prayers in the way we want him to…HIS ways are not ours, and that’s hard to accept, but true. It doesn’t mean I don’t question it- it’s hard to understand, but one day we WILL know.

Many people have asked how Caden is doing. Now that’s a long story, but we have assured him that we love him. He is dealing the best way he can- just like us.

I turned my desk Praying Parent calendar today, and thought I’d share what it said…
“We are dependent on God to enable us to raise our child properly, and He will see to it that our child’s life is blessed.” One thing I have learned is that I should not try to force my own will on my child in prayer. I have found it is better to pray more along the lines of “Lord show me how to pray for this child. Help me to raise him Your way, and may Your will be done in his life.”

I believe God’s will was done through Coleman. I know it.”

The family is asking that instead of flowers, please send donations in Coleman’s memory to either:

The Hospice House of Fort Dodge, Iowa
The Ronald McDonald House of Iowa City
or curesearch.org

A Different Perspective

2009-01-07T23:42:00.002-07:00

Where am I?

Oh, I'm in my dumb crib. I remember now. Mom put me here last night. Man, I still don't want to be here. Maybe if I scream she'll get me out this time.

"AAAAAAHHHHHHHH"

Ah, there she is. Hi, mommy! Come here, let me give you kisses... Oh, sorry. I know it hurts when I bite your lip. I just can't help myself.

So, what's for breakfast. I want it now.

"AAAAAHHHHHHHH"

Didn't work. Let's try again.

"AAAAAHHHHHHH"

There it is.

No! Wait! I don't want this! What is she thinking? I want the yellow cheesy noodles. Maybe if I throw it I'll get my cheese.

YES! That one went far! Oh, and check that out! That one is sticking to the wall. Oh, wait. Mommy doesn't look very happy.

"All Done!"

Why isn't she getting me cheesy noodles? No! I don't want to get down.

"AAAAAAAAAAHHHHHHHHHHHHHH"

Why are you taking me out of the kitchen? I want cheesy noodles!

"AAAAAAAAAAHHHHHHHHHHHH"

Now is my chance. Mommy isn't looking. Okay, here is the cabinet. Oh, looky here. I remember this box. I think there is some yummy stuff in here.

Oops. Mommy isn't going to be happy that I spilled these chocolate balls all over the floor again.

HEY! Don't take them away! These are fun!

"AAAAAAAAHHHHHHHHHHH"

Don't make me go in the other room again! I want to be in the kitchen!

Oh, I wonder what's behind this door? Oh, bowls! FUN!

No, no, no!!! I want the bowls!

"AAAAAAAAAAAAHHHHHHHHHHH"

Man, mommy is no fun. Maybe I should warm her up with a kiss.

Oops! I didn't mean to bite again. Sorry mom.

Well... let's go see what Lilly is doing.

Ahh... a movie! I sure like standing right in front of the TV. Oh, and look at all these buttons. I wonder what this one does.

What? What did I do? Hey, where did the movie go?

No, Mom! Don't make me move! I wanted to be right there!!!

"AAAAAAAAAAAHHHHHHHHHHHHH"

Hey, why is Lilly is the bathroom? I want to be in the bathroom. Maybe there is water in the tub! I love the water. I think I'll go check it out. Hey... no...no... let me in there!! I know you're hiding the water from me!!

"AAAAAAAAAAHHHHHHHHHHHHHHHHHHH"

Fine, let's go see if mommy was smart enough to turn on Signing Time for me. Oh, good Mommy. Oh... I love Rachel. Look at all those fun signs I could use. By why? Mommy sure seems to get excited when I yell. Oh, yelling is fun.

"AAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH"

YAY! Mommy came to watch Signing Time with me! Come here mom, let me give you a kiss.

Oops!

(The first hour of Noah's day, from Noah's perspective, as told my Noah's mommy)

Some Recent Pictures

2008-12-30T16:29:00.006-07:00

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.