Noah's Adventure

I'm not the Doctor. I'm just the mommy.

2012-03-05T22:38:00.001-07:00

And there are times when the mommy should trump the Doctor.

Noah isn't doing well. (If this is how you are finding about it, I'm sorry. I need to work through it and get rid of any bad feelings before I can just rehash the same thing over and over on the phone- so please forgive me)

He seemed to show improvement after the steroid dose and pacer. He started eating better and feeling better and he stopped throwing up. Well, now he's doing all of that again.

The poor kid has lost a ton of weight and looks like you would find him in a concentration camp. I expected some weight gain after the steriods but we saw nothing.

After his last cath the cellular rejection was a zero so they cut his steroid in half and planned a course of treatment for antibody rejection. Almost immediately he started feeling too tired. His resting heart rate was way too high for him. He stopped eating as well, looks super pale, he started throwing up after meals again.

I'm telling you. Something isn't right. He needs more treatment. Denver agrees. Now I just have to convinve Primarys to agree. I don't think another cath is going to show the localized/patchy rejection that I've suspected from the beginning. But he needs to be treated because his symptms aren't getting better. Regardless of the tests! Plus, sending him home and tellin me to watch for symptoms - the SAME ones I just told you he is having is so not helpful!

Rejection, A Pacemaker, and Lots of Tears

2012-02-24T17:17:00.000-07:00

It's been a very long time since I've updated Noah's blog. I guess it's safe to assume all has been going well and I didn't have much to share.

Until this past month that is. The past few weeks have been such an overwhelming experience that I've had to wait until I could process it all before I could share it here. But now that I'm ready to share, I need to start at the beginning to fully chronicle and explain the situation.

In 2010 Noah has his yearly cath in Denver. He hadn't had one in 2 years but had been doing really well. He was only on one immune-suppression med (Neoral) and didn't have any signs of rejection. Unfortunately, his biopsies came back with a cellular rejection level of 1R on the International scale. It was decided that, because he wasn't symptomatic and 1R is very low, we wouldn't do any treatment. But instead of waiting 2 years, he would come back the next year.

Fast forward to 2011. Noah was now on his one immune-suppression med and we had added a blood pressure med to try and help his blood pressure. The morning of his cath (in Denver) we did an Echo and for the first time I noticed his heart rate was all over the place. Ranging between the 40's and the upper 90's. I always watch real close and had never seen this before. Instantly, I was on alert. The only time Noah has ever had rejection before it was right after transplant. His biopsy came back zero but he was having erratic heart rates and arrhythmia's. That eventually lead to PVCs and SVT. Once we treated for rejection, that all cleared up and his heart rate/rhythms went back to normal. So seeing his heart rate jump around was an instant red flag.

My concerns were confirmed when Noah's heart rate dropped dangerously low during the cath procedure requiring meds to bring it back up. The biopsy results came back at a 1R again. This time, we decided we needed to do something. But since Shane and I didn't want to stay in Denver for 3 months for treatment and his level was still really low, we were able to do a 10 day oral steroid taper and see if that would help. We also added a second immune-suppression med (Cellcept). When we came home and followed up with our local hospital Noah's Echo's looked good, his ECG's were okay, but we noticed his heart rate was now sitting in the 60s. Not the 80/90's it previously did during rest.

We continued to watch him closely but in November (3 months after his cath) he developed UTI symptoms that progressed quickly and ended up with Noah peeing blood every 5 minutes and being in a lot pain. Alison (Noah's Transplant Coordinator Super Star) suggested we test for the BK virus. It came back positive. It's a very common virus that the majority of the population are carriers for but without symptoms. In the transplant/immune-suppressed population, it can cause serious symptoms that can lead to Kidney Failure and eventually a kidney transplant.

We had to lower all of his immune-suppression meds and do a round of IVIG (anti-bodies from the blood of 1000 donors) to try and help his body fight off the infection. It became a balancing act of keeping his medication levels low enough that his body could fight this infection and save his kidneys but also high enough that his heart would be protected. (At this time we also found out that Noah has a stage 4 kidney reflux which we will need follow up care.)

We thought we had things under control and Shane and I attributed Noah's increasingly horrible behaviour on all the sensory issues he had dealt with during these tests and treatments. His behaviour continued to get worse but I didn't see any rejection symptoms that had me overly concerned other than his low heart rates. Then toward the end of January Noah stopped eating. I watched closely but thought maybe it was just a phase that would pass. The big sign was that he stopped drinking his carnation bottles too. There have been times when he hasn't eaten very good in the past but he ALWAYS drank his milk with carnations. About two weeks into the no eating, I forced him to eat some breakfast. 5 minutes later he threw up. That is a HUGE warning sign. But we didn't want to rush it in case it was just a tummy bug. The next day, the same thing happened. He had a few bites of breakfast and 5 minutes later he threw up. Now my Warning Sirens were going and I called our Local Transplant Coordinators in a panic.

This is where things get hairy (and the very long story continues).

I called and called and called and couldn't get a hold of anyone. I knew he needed to be seen that day and I was running out of time to get him in there. No one was returning my voice mails and the hospital operator refused to page the on-call coordinator during regular business hours. I FINALLY got a hold of them and they fit him into the schedule.

His echo was the same, his ECG was the same (but low heart rate) but his symptoms were worrisome. But it was decided to send him home and maybe come back again next week. As we left the hospital, I call Alison to keep her updated and she was not happy. His symptoms really worried her and she asked to call me back after she had talked to Dr. Pietra.

When she called me back, I was not at all ready for her response. "Come Now!" She wanted us on a plane that night.

I instantly started questioning myself. Wondering if I was over-reacting. Going to Denver so unexpectedly, possibly staying for several months, what would I do with my other kids.... it was overwhelming. After talking with Shane and knowing that a HUGE snow storm was hitting Denver the next morning and thinking my flight would be delayed anyways, we decided to wait the weekend and if he wasn't better by Monday, we would go. In the mean time, Alison spoke with the team at PCMC and they decided to take the situation a bit more seriously. They now both agreed that we needed to do a heart cath and biopsies. They were also willing to do it here in Salt Lake so we didn't need to go to Denver.

The next day Noah went in for a Heart Cath. PCMC does their biopsy results a bit differently than Denver. In Denver, they rank the cellular rejection on the International scale and then look at the vascular function (like the Coronaries) and the Donor Specific Antibody blood count. At PCMC, they have two scales. A C Scale (Cellular rejection 1-5) and a V Scale (Vascular or Antibody rejection 1-5). Plus they look at the DSA (Donor Specific Antibodies: Antibodies that your body makes specifically targeting the donor organ). This cath showed that his Cellular rejection had gotten better (it was now a 0) but his AMR (Antibody Mediated Rejection was now a V3. The DSA also showed his body was making Donor Specific Antibodies.

Due to his symptoms (low heart rate, not eating, throwing up, looking pale, being tired) and his biopsy results, Noah was admitted to the hospital Friday morning. The plan was for 2 rounds of IVIG and 6 doses of IV Steroids. I went into the treatment expecting his heart rate to return to normal and for him to get better. But watching his heart rate on the monitor that weekend I realized very quickly that it wasn't getting better. It was actually a lot worse than I expected. It was more than just a slow heart rate. Noah was having lots of PVCs, skipped beats, extra beats, and even something that was entirely new to me. Something called Junctional Escape beats (or something like that). I was told that those are the types of beats that can kill you. Your heart just stops beating. As long as he was having them, he couldn't go home.

It was decided that Noah was having something called Sinus Node Dysfunction. (I'll try to explain that: the heart has a built in pacemaker, the part of your heart that makes your heart beat. The first part is the Sinus Node, then it goes to the AV node, then to the bundle of HIS, and on to the bottom of the ventricle [I might be explaining this wrong, don't base your medical degree on my explanation]. The part that is suppose to fire first, the Sinus Node wasn't always working. Normally, the AV node would pick up and start the heart but even then, sometimes it wasn't firing either. This was all causing the super low heart rates and when the AV node miss-fired he was having the escape beats.) Dr. E at PCMC thought this was now a permanent result of the ongoing rejection. She said it wouldn't ever get better and that Noah now needed a pacemaker. Denver said they wanted to try a more aggressive medication route first (which is standard treatment for all rejection there).

Shane and I thought and prayed about it. And while the heavy duty medications scared us (they aren't without risks of their own) we felt that we would rather treat for rejection before assuming it was permanent. As the ONLY way to know for sure that this wasn't going to get better was to try and treat it first.

Dr. E refused. It was her medical opinion that it wasn't going to get better and she basically gave me an ultimatum. PCMC or Denver. But if we chose Denver, ALL his care had to go. They weren't going to even facilitate check ups anymore. That would mean going to Denver every 3-4 months for Echos and routine Dr appointments.

This would have upset me no matter what, but add in the pregnancy hormones and I was a complete mess. I usually stay very analytical and rational during these discussions so that I can process what the Dr's tell me and save my crying for a more private setting. Not this time. I could not stop crying!

You see.... Noah received this amazing gift of life with this new heart at 26 days old. Having it last him even 20 years is all that's been seen so far. My prayers are that it lasts him MUCH longer than that. I pray for a very long lifetime for him without needing another transplant. But to tell me that at 4 1/2 yrs old his heart is already permanently damaged is heart breaking to me.

Dr. E agreed to discuss it with the other transplant Drs in the state the next morning and see if any of them thought it was a good idea to try the medication first. She came back and still said no. I feel like I plead my case as well as I could. I told her that we couldn't go to Denver. There was no way I could split our family up like we did when Noah was born. We had to stay together. So I didn't want them to tell me to chose between them and Denver. What I wanted, was for her to make me feel more comfortable with the Pacer decision. Could we compromise? Was there another step we could take before doing this permanent procedure that wasn't without it's own risks and future complications. I begged, I cried, I pleaded.... and she still said no.

I can't even begin to tell you how this made me feel. But to try.... I felt like my rights as his mother were taken away. We were no longer given a choice. It was their way or the highway. I felt 100% forced into this and it was overwhelming. Didn't my opinion as his mother count for anything? I mean, they wanted to send him HOME in the first place. It was only my concern and Alison's pressuring that even led them to take this whole thing more seriously and yet, now they knew better than all of us. I was angry. But when it came down to it, we had no choice. We couldn't go to Denver and live in a hotel and split up our family or take Lilly out of school... we were stuck.

The procedure was scheduled for the following day. I was told that once they got in and did the testing they would determine if he needed just a sinus node pacer or if he would need a dual chamber (sinus node and AV node pacer). If he needed the dual chamber, he might have to have his chest cracked open to put it in. I was very firm in telling them that if they decided he needed his chest cracked then they had to stop and I WOULD be moving to Denver. (It was a very serious HELL NO).

Luckily, he didn't need that. They had a very hard time placing the lead through his vessels but were finally able to get it placed without complications. He now has a Pace Maker in his upper left shoulder that paces his heart at 80 beats per minute. While resting, it paces 100% of the time. I'll find out during further testing how much his heart beats on it's own while he's active.

The entire stay was very hard on him but he did surprisingly well. The hardest part was getting the IVs. Right before his pacer procedure they needed to place another IV. I requested the best of the IV team (but I don't think they sent the best). They tried twice and couldn't get it in and I told them they had to stop. They would have to place it after he was asleep in the cath lab. Afterwards he was SO upset. He looked at me and asked if he could have a carnations. But since he was going in for surgery he wasn't allowed and I had to tell him no. It was the saddest thing. He wasn't scared or freaking out. He was utterly and completely sad and pulled the blanket up over his face to cover his emotional pain. Just thinking about it makes me cry. I climbed into bed with him as I bawled and hugged him tight. The poor boy has to go through so much. Sometimes I just seems like too much. I wish I could do it all for him.

After being in the hospital for an entire week, he finally got to come home. He came home on 13 medications including increased immune-suppression levels and an Oral Steroid taper. His next cath and heart biopsies was scheduled for a week and a half later.

That was three days ago. Results came back that showed he was still a V3 and his DSA hadn't changed. Not better but not worse either. It was decided to keep him on the steroids a bit longer, proceed with the IVIG infusions once a month and recath him in 6-8 weeks and check the rejection level again then. If symptoms get worse, his pacer has to pace him 100% (showing his heart isn't beating well at all on it's own) or if the biopsies show increased rejection during the next cath we will need to treat it more aggressively. The plan would most likely be ATG (a super immune-suppression med that lasts nearly a year and suppresses the T cells that can cause antibodies) and a procedure called Plasmapheresis (which is like dialysis for the blood but gets rid of existing antibodies). I hear the Plasmapheresis is horrible and I REALLY hope this rejection clears up on its own.

This whole situation has been overwhelming. Not only is it hard enough to face the reality of Noah rejecting his heart and having it damaged and needing a pacemaker but add on top of that feeling pressured into a treatment we weren't ready for and this past month has been horrid. All the hormones I have going on right now have made it even harder. But I'm trying really hard to come to terms with it all and not be angry at the hospital. I know that they were just doing what they felt was best. I just wish things could have played out a bit differently.

Shane and I both prayed that whatever was best for Noah would happen. And since the choice of treatment was taken away from us, all we can do is have faith that what ended up happening was for the best. Ultimately, we have to put it all in God's hands and trust that He is protecting and watching out for my little man.

One good thing that has come of all this though is that Noah is feeling better with his heart rate not being so low. His behavior has gone back to a manageable level of freak outs. But best of all, he has started giving kisses and hugs again. And even tells me he loves me. It has been MONTHS since he has felt well enough to show any form of kindness.

The day after he got released from the hospital he came up to me and told me how he was going to play with all of his trains at home while Mom and Dad and YeeYee and Bay Aayee were all home too. Then he says "I so hapeee!" Talk about melting my heart! Then a few days ago he was saying Mom? Mom? Mom? I said, Whattrains at home while Mom and Dad and YeeYee and Bay Aayee were all home too. Then he says "I so hapeee!" Talk about melting my heart! Then a few days ago he was saying Mom? Mom? Mom? I said, What Noah? and he replied "I ove ooo!"

I ove ooo too my sweet sweet boy.

He Did It!

2011-06-21T10:29:00.000-06:00

I've been half-heartedly trying to potty train Noah for a while now. I never put much effort into it thought because no matter how many times we sat on the potty, he would never go. He never acted like he could feel the sensations. His therapists told me that kids with sensory issues tend to train later so this didn't surprise me much.

But for the last several months, every time I changed Noah's diaper, I would tell him that we don't pee or poo in our diapers. We go in the potty. Then I would ask him, "Noah, where do we go pee pee?" And he would always say "In the Potty!".

Well, the other day Noah came up to me and said (for the first time ever) he needed to go potty. So I took him to the bathroom and he sat down. And nothing happened. I decided to go ask Shane to come in and maybe he could "show" Noah how big boys use the potty but when I came back I found it wasn't necessary. He had gone pee pee in the potty for the first time EVER! I guess he just had a little stage fright with Mommy in the room.

We made such excitement over this. We jumped and clapped. We high-fived and danced. We ran outside to tell Daddy "I did it! I pee in the potty!". Miracle One...Check!

Miracle Two? He has gone pee pee AND poo poo in the potty all on his own, EVER SINCE! I kid you not! He goes in and sits on the training potty and then dumps the pee pee in the big potty, ALL ON HIS OWN! When he needs to go poo poo, he sits down on the big potty and goes. It absolutely blows my mind. Uhm, hello? He went from ZERO, NADA, ZIP potty training progress to BAM! No accidents.

This is, most definitely, a tender mercy to weary mommy. It also gives me hope for all of the things to come in the future and what this kid is capable of.

It seems Noah just makes awesome leaps in developments around the time of his birthday. Last year, when he turned 3, he finally started talking a little bit. He would make sounds that were the beginning parts of words instead of just grunting and screaming. Since then, he's made tremendous progress. And, just recently, he did it again. With his 4th birthday, he potty trains and starts saying his first FULL words consistently without having to see me say it first.

It's just absolutely amazing.

Progress and a Plan

2011-04-26T23:00:00.000-06:00

My sweet little man.

Noah has done some amazing things since he was born. I still get amazed when I think about how sick he was and how close we came to losing him so many times and yet now he's the most energetic little man I have ever seen. His capacity to love is extreme. His tenderness is unmatched. He teaches me so much, every single day. I am truly honored to be his mother.

Right now, Noah is coming to the end of his first year of preschool. While he's made tremendous growth during the past year, I can't really attribute any of it to his schooling. Most if his progress is from things we have worked on at home or in private speech therapy. This has left me with some concerns over how I should address his education in the future. Homeschooling has been very much on my mind but I worry that I'll have enough time to really focus on it while also working full time.

In preparation for his next year of preschool, Noah had his IEP (Individualize Education Plan). For those of you not aware of what an IEP is, it's basically a plan put in place with the school to address Noah's personal needs. It lists his goals and what items or accommodations he might need to reach those goals. After considering what might have contributed to this past less-than-stellar year, I decided that Noah's original goals, and how they were addressed, was the underlying problem. They had been working on basic low level goals and when he wouldn't participate due to sensory issues, disinterest, or even just because he's 3 they assumed he couldn't do it and never pushed for more.

This year, I went in prepared to really lay out what I felt he needed to be successful. And also some items that would help me track his progress and work. I suggested his ultimate goals be age appropriate based on requirements for starting school in an average kindergarten class. Even though these goals will push him, I am much more comfortable with a 50% attainment of something that is a challenge than 95% attainment of something easy.

I now feel much better about the whole thing. While I still have a few reservations about how much the teacher is actually involved in the class, at least now I have a legally binding contract to help get Noah what he needs. It also addresses his personal learning style. See, he is very HIGH-INTENSITY! He needs positive reinforcement. Lots of cheers and high-fives and screams when he gets something right. Without it, he quickly loses interest and shuts down. He also needs sensory integration assistance like jumping on a tramp, swinging, throwing balls. Without it he can't focus or pay attention.

But all in all, I really am amazed at all this kid can do. He knows his entire alphabet. He can recognize all the letter. He can count to 12 all by himself. He can count items (not just saying the numbers). He's almost got all his colors memorized (this has been a hard one for him. I've often wondered if he had some colorblindness going on).

His speech is AMAZING! The other day, when I told him we were going to a movie and would get popcorn, he said "Pa cor?". I about died! Yes, he still dropped the last consonant but he said a double syllable word which is really hard for him. The day before he said "Happy" when usually it's just "Haa". A typical conversation with him goes something like this:

Noah: Give Da Hu (I want to give Dad a hug)

Me: Okay, when Dad gets home from work you can give him a hug.

Noah: Da hoe wor hu me? (When dad gets home from work he'll give me a hug?)

Me: Yes, When dad gets home from work he'll give you a hug.

Noah: Okay, nie ma. (Okay, goodnight mom.)

Uhm... hello!! That is absolutely AMAZING!! Even in just the past few months he's made tremendous progress with his communication. There are still many times and circumstances when communicating his hard for him. If he's upset, embarrassed, sad, tired etc. he may not even be able to get any words out. He relies on gestures but sometimes even that doesn't work. It can be very frustrating for him. But he's learned ways around his mouth not working. For instance, there are certain sounds that his mouth just has a hard time making. But he's learned that if he plugs his nose, it helps the right sound come out. So now, every time he says Shoes, he plugs his nose. Sure enough, instead of saying "Goo and socks" and plugs his nose and says "Shoes and socks". Just goes to show that even though his brain and mouth had a hard time communicating, he is a very smart and resourceful little guy.

But one of my greatest joys with his development is his interaction with Lilly and Allie. He follows Lilly around like a little puppy. They play games and even argue over whose turn it is to pick the movie. He's sweet and gentle with Allie. Gives her kisses and always asks me if Allie is sleeping so he knows he needs to be Ky-It (quiet).

I think about how much desire Noah must have had to be here on earth and experience life to get him through the pain he experience during the first year of his life. Of how much he continues to fight to be here and learn and grow. Things haven't been easy for him by any means. And yet he keeps fighting. He keeps trying. He never gives up. I am in awe of his strength and determination. And I'm humbled by his sweetness and tenderness. It's impossible to be around him and not know that he's someone very special. I am truly blessed to be his mother.

Mr. Magoo Update

2011-03-11T18:13:00.001-07:00

Man, I love this little guy.

I look at him and I'm just amazed at how far he's come, the odds he's beaten. I'm so blessed to have him.

Noah's thing right now is all about kisses. He won't leave my side without giving me hugs and kisses a couple times then he blows me kisses as he walks away. When I'm in feeding the baby he will pop his head in and blow me kisses. Then, when Shane is at work he tells me over and over that he wants to give Dad a hug. "Da hu?" "Yes, you can give dad a hug when he gets home from work." "Hoe wor?" "Yes, when he gets home from work." "Yay!" Then he kisses my arm and blows m kisses as he runs off to play. This repeats about 60 times a day.

He also is getting more confident with talking. He may not be saying full words yet but he's trying to communicate and that's progress. This morning he started pointing to everything and telling me what it was. It went something like this...
"Tay."
"Yes, that's the table"
"Be"
"That's the love sac but you can call it a bed."
"Be"
"That's the couch."
"Cow?"
"Yes, couch."
Pointing to the couch, "cow" and pointing to the other couch "Cow. Two cow.?"
"That's right buddy! Two couches! Good job!"

Then he counted the windows too. The other day he was counting in the car and he counted to 12 all by himself. He also knows his letters and the alphabet. When driving, he spells out the words he sees from the car. He doesn't know what they spell but he recognizes the letters. Last Sunday he shocked me by saying T..E...X..I...C...O... when we stopped near the gas station.

He's still working on his colors. He knows the color names but doesn't quite get the name for the right color. He loves to say yellow. It comes out like "yewweee". Too cute.

His tantrums are getting better. At least for me. He gets so excited playing with dad that he ends up having major breakdowns when play time ends or if he thinks Shane isn't paying him enough attention. Or heaven forbid Shane try to use the restroom and shut the door.

The other thing he does is ask me if we're going to the dr's every day. "We go da daa me?" Or if we are going to school or staying home. He's very interested in what we are doing.

He still couldn't survive without vanilla carnations but he is growing and getting bigger every day.

He has also started playing with Lilly and wanting to do everything she is doing. I wondered if that day would ever come and I'm so happy to see it here.

Yesterday Noah had an echo to check up on that precious heart of his. Its beating strong and looking healthy. And once again I'm reminded of the amazing gift that has been given to us. I hope his donor family knows how greatful we are.

This summer we will take a trip back to Denver for Noah to have a heart cath. They will take biopsies and make sure there is no rejection on a cellular level. I can't say I'm looking forward to that but the kids are excited to go to McDonalds work again (the Ronald McDonald House).

All in all.... I'm pleased with the progress Noah is making. I love his sweetness and adore his toothless smile and I always remember how lucky I am to have him one more day.

Germs Are Not For Sharing

2010-10-08T18:46:00.000-06:00

It's that time of year again.

So I'm sending out my plea to all our family and friends... PLEASE get a flu shot and help us keep Noah healthy. Getting the flu is never fun for anyone but it can be especially dangerous for Noah. If you get the FluMist (nasal spray) please let me know. That is a live virus and can be considered contagious. If you get the FluMist instead of a flu shot, we will need to avoid contact for 2 weeks. So please help me protect Noah by letting me know.

Also, it's not just flu shot time. It's that time of year when germs are in abundance. Stomach flu, fevers, even just snot filled noses, coughs and general feelings of illness. At our house, they aren't just an inconvenience. Please be mindful of Noah's special health care needs during this time. As his mother it's my job to try and make the best decisions regarding his care, this includes weighing the risks vs benefits of activities and outings. Sometimes we won't be able to make it to planned activities and outings for the sole reason that I'm worried about the risk of being exposed to illness. Some may think I'm being over-protective and cautious. But that's okay. I'm still new to this life. Noah's only been transplanted 3 years. I'm still learning whats okay and not okay. Regardless, it should be my decision and I sincerely hope that my friends and family understand and respect that.

That said; if you ARE sick, HAVE been sick (even if you are now feeling better), THINK you are getting sick, or have been in CONTACT with someone who is sick... and will be at the same get-together as Noah, PLEASE call me, text me, email me, or pass along the message and let me know. As Noah's mom, I will decide if it's a risk we are willing or can take. Either way, I will be extremely grateful for your thoughtfulness and consideration.

I know this request is straight and to the point. I really don't mean to offend anyone at all and I hope I haven't. It's just a very important topic to me; one that I have to take seriously for Noah's sake.

So before the situations arise, THANK YOU for being considerate of Noah's specials needs and for getting a flu shot to help stop the spread of germs before they even begin. I really appreciate all that you do and I'm grateful for such wonderful family and friends who understand and help me do what's best for my little man.

All Things Noah

2010-09-29T20:28:00.000-06:00

It's been a month now, since Noah started preschool and he is finally adjusting to it. He still acts worried when I drop him off and he says "Momma sit" over and over hoping I will come in his class and sit with him. But he hasn't cried in a bit and now when I pick him up he's happy and excited. You know he's having fun when he has to say "byyyeeee" over and over and even yell it from across the parking lot. His teacher/aids say he's doing much better. He's trying the snacks, playing and participating, and he is NOT falling asleep. Today I was informed that he's yelling outbursts for no reason and throwing things. I was happy to hear it knowing he's finally opening up and being his true self.

His speech is coming along. He hasn't made any huge break throughs but it's a work in progress and he's trying really hard. I feel so blessed that he has such a fabulous therapist who is familiar and knows how to treat Apraxia. The fact that the service is free through the Scottish Rite is even more of a blessing since my paycheck can't seem to keep up with all of expenses these days.

One new therapy we just started is feeding therapy. I've always figured this was in store for Noah since he is by far the worst eater I have ever seen (the kid does NOT eat anything besides cheese). I've kept him on Soy Milk (since milk aggravates his diarrhea) mixed with Carnations since he loves it and it gives him the nutrition he wouldn't be getting otherwise. The only problem with that is that he only drinks it in a bottle. Yes, my 3 1/2 yr old drinks several bottles a day. O-well. It's just not a battle I want to fight right now. I'm more concerned with his nutrition than the bottle dilemma. I've tried refusing the bottles for almost a week before and he still won't eat. Lately, I've been following him around the house feeding him bites of food. Its helping him eat but not really solving the problem. Anyways, now that we have started therapy for it, I hope to see improvement. Instead of a sensory approach like I suspected he would need, we decided to do a behavior approach. It's very similar to what his speech therapist does (which really works) so I figured it was worth a shot.

He still needs some major Occupational Therapy intervention to deal with his sensory issues - I'm not sure if I've mentioned it before but Noah has Sensory Integration Disorder. I've been working with him as much as I know how. Doing lots of jumping, swinging, throwing, etc that seems to help him cope but it's fairly obvious from his behavior and aggression that it's not enough. I'm trying to get him in a program that will be a bit more affordable for us but if this doesn't work out I will be setting up the therapy through the hospital. He will be getting an OT eval and most likely services through the school district and his special education classroom but those services are so limited (and usually a group setting, not one-on-one) that he really needs a more personal program. But since I've spoken with his teacher about these needs, she found him a trampoline to use and allows him to bring a ball to throw which has made all the difference in the world. He started opening up and enjoying school more once he was able to do this.

The final update about Noah is his psychology appointments. He's been through a few hours of evals now and has been accepted into treatment. What type of treatment, I'm not sure about yet. Those decisions will be discussed at the next appointment. After the last eval, his therapist told me that while Noah doesn't fit any one group of issues, he does seem to be in a large classification of the Autistic spectrum. I guess what it's called is PDD - Pervasive Developmental Disorder. It's where you have some characteristics of Autism but not all. (Although, I am anything but an expert in this field) This is kinda tricky. I do not believe he has Autism. And really, neither does his therapist. But since it fits, and we don't really have all the answers just yet, giving him that diagnosis will help him get services and will also give us an idea on what services he needs. I'm hoping that Noah's behavior and aggression are due to his speech issues and his sensory problems. That seems to me to be a bit more plausible (and likely to outgrow) than Autism. Either way, we are figuring out what he needs.

Noah is still the sweetest little man; giving hugs and kisses. He's playing more with his Dad and was very concerned when Shane was out of town visiting his family. Noah couldn't have been happier when his Dad came home. He has also started playing WITH Lilly more. Hearing them giggle and interact does this Momma's heart a lot of good. One things for sure, he may be a handful but I am his biggest fan. Not a moment goes by that I am not full of gratitude for that little booger.

Health Update

2010-07-27T14:07:00.000-06:00

Noah's recent blood tests revealed he does NOT have Celiac or CMV. YAY! We still have to do his stool sample and a follow up panel in 6 weeks but we are that much closer to solving the mystery of Noah's chronic diarrhea.

But it has been confirmed that he does NOT manage his body temp. He doesn't seem to have a hard time making heat (and staying warm in cold temps) but he can't get rid of heat. This causes his internal body temp to raise when he is in hot temps. For example, he was outside in the shade just walking around, nothing strenuous, when it was about 85* outside. After an hour, he seemed really warm and when I checked his temp it was 100*. Normally he is about 97* when playing inside.

So we have to do more tests and possibly see a Neurologist to figure out what the cause of this might be. He will also need to have restrictions on how long he can be outside or in hot conditions. I also need to get him a cooling blanket and other tools to help keep him cold.

If you have any idea where I can get a medical cooling blanket please let me know. My initial searches online have not been fruitful.

It Was Our Home Away From Home

2010-07-27T10:33:00.004-06:00

This is a video that shows the magic of The Ronald McDonald House's in Denver.

How We Got Here

2010-07-07T06:00:00.001-06:00

We've come a long way in the past three years. Today Noah is a spunky three year old who loves to throw balls, jump on the tramp, swing for hours, and watch Curious George. He loves his Nanny and Poppy and asks to go to their house every single day. There were many times since he was born when I wondered if we would ever get to this point though.

I had been induced 4 weeks early due to some worrisome results after a stress test. It was suspected that preeclampsia was causing my placenta to shut down. What started out as a normal induction quickly became serious when Noah wasn't getting enough oxygen. I was put on oxygen and told to lay on my side and when that didn't help the room was filled with Dr's and nurses within minutes and I was told that I had to push him out now, even though I was only dilated to an 8 or I would have to have an emergency c-section. I pushed him out in just a few pushes and I thought all was well because they let me hold him for several minutes. What came next was a whirlwind. I can still remember going into the nursery to see Noah for the first time after he was born and seeing the Neonatologist, from the children's hospital next door, listening to his heart. "Your son has a heart murmur and its not the normal kind of heart murmur. We are going to take him over to Primarys and run some tests. Don't worry Mom. We'll take good care of him." Then I watched as the Life Flight team wheeled him away. That night, after many tests, Noah was diagnosed with Critical Aortic Stenosis. The next day specialist tried ballooning his aortic valve and when that didn't work we waited to find out if any doctors would agree to perform a Ross-Konno procedure. No one would.

Noah was very sick. His Billirubin level was lethally high, his oxygen level low, and the pressure in his lungs climbing every minute. My grandparents came to see him one day while Shane and I were meeting with the Doctors. The nurses told them that he was one very sick little boy.

One day a Fellow assigned to Noah's case informed us in passing that there was nothing left to be done, they were out of options. He gave us the impression that we would have to let our son die. We were devastated. We rushed to the waiting room where my family was and cried in each others arms. Soon after we met with the Attending Cardiologist who gave us another option. Noah would need a Heart Transplant to live.

The Transplant Cardiologist at Primary Children's Hospital had transferred to Pittsburgh the Friday after Noah was born, leaving the transplant program at Primary's on hold. If we wanted to try and get Noah a new heart we would have to go to a hospital out of state to get it. We were given two options to choose from. We could either go to Loma Linda in California or to Denver, Co. I called around and talked with their on-call transplant coordinators, I even spoke with a local family whose son had a heart transplant at Loma Linda. I did research online and everything we saw said Loma Linda. We tentatively made up our minds that we would go to California. The next day we sat in a secluded corner of the hospital and prayed together. the most overwhelming feeling came over us that we should go to Denver. We went over it again; Denver was harder to get to, rougher weather if we had to travel in the winter, we had never been there and they hadn't been doing pediatric heart transplants as long as Loma Linda. But when I had called the transplant coordinator, Alison, had been so much kinder and was more helpful. They had less babies waiting with the same criteria and most of all, it felt right. We rushed back to the NICU and told them we were going to Denver.

We quickly packed up some stuff and drove through the night to meet up with Noah who went ahead of us by Leer Jet transport. We met with the Transplant Coordinators and got the necessary testing finished up to get Noah put on the UNOS waiting list. The next twelve days were so hard. Noah wasn't doing well and he had some complications. He was so sick that we were given a few other options than just a "routine transplant". He was also listed as ABO Incompatible, meaning that instead of only being able to get a heart with his blood type, he was sick enough and young enough to be able to get a heart with any blood type. TCH was also part of a study that allowed them to offer DCD (death by cardiac donation). Then, on Thursday July 5th Noah had a Heart Cath to put in a stent and even possibly have a Hybrid. The process was long and took a lot out of Noah. I was so worried and lonely that I called Shane and asked him to come out that weekend even though his next planned visit was a week away.

Back in the CICU Noah was headed down hill. His tummy was swelling, his vitals were bad and he was losing strength. I knew we didn't have much time.

Friday came without much progress. Everyone was worried and all we could do was wait. I spent the day at the hospital then headed back to the Ronald McDonald House to pump and eat dinner before heading to the airport to pick up Shane. I was sitting on the floor against the door of our little room, pumping, with my phone on one side and the pager from the transplant team on the other when my phone rang. It was Alison, she had come back on call that morning for the first time since we had arrived. Noah was getting a heart.

It was divine intervention that made it possible for Shane to be there that night. I know without a doubt that I was prompted to have him come when it wasn't in the plans. I am so grateful for that. Noah went into surgery at 8:30 am on July 7th, 2007. I waited in a private family room while Shane waited at the Ronald McDonald House with Lilly. Alison gave me updates every hour. I was surprisingly calm. I tried really hard not to think about what was happening and I felt strengthened with a strength beyond my own as I did the entire time I was in Denver. At 3:55pm I was brought into the CICU to see Noah for the first time with his new heart.

He had the corner bed and every space was busy with someone doing something. Dr. Campbell paced at the foot of his bed whistling "Downtown" by Patsy Cline the entire time. His tubes were draining and the pacer leads were keeping his heart beating while he was drugged and sedated. I had been warned about what he would look like when he came out after the transplant. I expected to see all the wires, and tubes, and the incision down his chest. I was glad I had been prepared, it made it a bit easier but at the same time, it was so awful.

It took Noah a long time to recover enough to be transferred out of the CICU (Cardiac Intensive Care Unit) to the CPCU (Cardiac Progress Care Unit). I knew it would since he had been so sick before. When the day came, I was scared. A new set of nurses and Doctors who were taking care of several patients at once. He wouldn't have one on one care anymore and because I had Lilly at the RMH with me, I couldn't stay at the hospital night and day. Luckily we were blessed with many loving nurses who took very good care of Noah and when I wasn't there and they couldn't hold him there were many volunteers who came and loved on him.

Noah was finally released toward the end of July. I brought him over to the RMH on a Friday morning and we celebrated Lilly's 2nd birthday. By Sunday he was screaming not stop. When I took him back on Monday for his first clinic appointment I could tell Alison was not pleased. It was decided to readmit him. He was put back on IV antibiotics for a suspected infection of his incision. He was having a lot of ectopy (missed heart beats, fast heart beats, etc.) One day while I was holding him his heart rate spiked. A nurse rushed in but it had returned to normal. A few moments later, he went into Vtac. His heart rate spiked to almost 300 bpm. The CICU team was called up and when several different tricks to return him to a normal sinus rhythm failed, he was given a drug to stop his heart. After a few days back in the CPCU, his nurse Ben reported his color off and a low crit level so a blood transfusion was started. That night I received a call about 3am. Ben was calling to tell me Noah had a bad reaction and was taken back to the CICU.

When I got there the next morning nothing could have prepared me for what I saw. Noah was back in the same bed he was in when we first came to Denver. He was on the ventilator and was swollen and red from head to toe. The Dr was digging around in his arm to get a central line and it wasn't working. His lungs were filled with fluid and he had hives inside and out. He was dying.

He ended up having a lung collapse twice and after a few days of no answers he was taken to the cath lab to take some biopsies and check for rejection. What they found was that Noah's blood pressure was dangerously high. Too high for even an adult. He was being taken down to get an MRI of his brain. Dr. Pietra told me that with pressures that high he would be surprised if there wasn't a brain bleed.

That wait was awful. Noah had already been through so much and had come so far... I felt sickly composed on the outside and frightfully out of control on the inside. Much to everyones surprise, the scan came back normal. The next day it was decided to treat Noah as if he was having rejection. The high dose steroid would also help the suspected TRALI (Transfusion Related Acute Lung Injury) that was attacking his lungs. He slowly began to improve.

The ectopy improved and his blood pressure went down and eventually he was released again. Once he was off all the sedation he did cry... a lot. I had to give him large doses of Benedryl to knock him out every single day. He also had really strange diarrhea. Other than that, he was doing well. We continued clinic appointments several times a week and counted off the days until we could go home. Shane visited every other weekend and my parents and sisters even came out to see us once. While they were visiting Noah almost had to go in for another cath to check for and repair a suspect CoArch of the Aorta. The pulses in his feet were faint and at one clinic appointment with another coordinator they couldn't be felt at all. I was so nervous I was nutty. The day of decision I took Noah up to the CPCU to find Dr. Pietra so he could feel for a pulse and make the decision. He grabbed his foot and called off the cath.

The day finally came when we were discharged and sent home to Salt Lake. Now that the day had come I was scared. But it was time. I arranged for enough oxygen canisters to get us through the 8+ hours of driving and I packed up the room that had been home for the past 4 months. We brought Noah home for the first time on October 30th, 2007.

Over the next few months we adjusted to home life again and tried to find a new routine. It was much more difficult that I would have expected. But we were finally together as a family and having Shane in the same house was all Lilly and I needed. Being apart was so much worse than I can even describe.

Noah had lots of clinic appointments and continued to do well other than his strange poop and crying fits. One day he pooped white curds and after several ER visits and insisting on seeing a surgeon we finally figured out what was going on. Noah had gall-stones. He went in for surgery on December 10th to have his gall-bladder removed and his appendix taken out (since Shane had his taken out it was a precautionary measure). I saw his gall-bladder after, it was about the size of 3 M&Ms and the 3 stones filled it to capacity. It was scarred and shriveled and it was a good thing it was removed. While his diarrhea has never gotten better, he did stop screaming and has never had white poop again.

It was sometime after his last surgery that things started to calm down. We found a routine and eventually life went on. It took a long time for me to deal with all of the buried emotions I had been suppressing. They expressed themselves in the form of panic attacks and eventually took a physical tole on me. But through faith and prayer and many several spiritual experiences I have worked through the trauma. And here we are, three years post transplant. We go to clinic every 4 months, sooner if he gets sick. He is active and lively and preparing for preschool in the fall. His speech is getting better and he is learning to express himself. He's growing and learning and loving and living life. Many people and all of his doctors always say you could never guess he had a heart transplant by looking at him.

The road has been rough but he made it through. And while there are days where he wears me out and in true three year old fashion tries my patience, I am so very grateful for every single moment of every single day.

Noah's Transplant Story

2010-07-05T17:28:00.000-06:00

Originally posted July 11, 2007

Thursday July 5th, Noah went to the cath lab to have a stent put into his atrial septum (the hole in between the left and right side of the heart). His heart was so swollen from the increased pressure, the Drs were hoping to relieve some of the pressure and help it shrink down (I saw the x-ray, his left side was SO big it touched the far side of his ribs completely collapsing his lung). As I sat in the Surgery waiting area, I felt so lonely. I saw all these other families waiting for updates on their loved ones. They had each other to talk to and help distract them. I don't think I have ever felt so lonely in my entire life. Then I had a thought. Shane wasn't scheduled to come out for another week because he couldn't take time off work. But it just so happened he had Saturday off anyways. I decided he needed to come out this weekend, regardless if the ticket was more money since it was short notice. He needed to be here. I called him and convinced him to come. I used the hospitals computer and bought him a ticket.

Noah's surgery took over 7 hours and when they were done, Noah was very sick. Over the next night, his stomach began swelling. By the next morning, the Drs were concerned that his bowls would rupture. He needed a heart so badly. The procedure had just taken so much out of him. It was suppose to help make him last longer in case a donor wasn't available for a while but it made him much sicker. I left the hospital scared but with renewed strength knowing I would see Shane in a few hours and that would help me be strong.
I went back to our room at the Ronald McDonald house to get dinner. My phone rang at 5:18 pm. It was the hospital. When I answered it, it was Allison the Transplant Coordinator. When she told me that, the thought came to me... "Do you have any idea what you do to me when you call???" She sounded very reserved and almost preoccupied. Then she said the last thing I expected to hear. "We may have a potential Donor for Noah." I was so shocked I think I actually asked her if she was serious. She told me it takes a while to work this sort of thing out so there was no rush. To go get Shane from the airport and then come on over. I hung up the phone. I looked and Jen and she asked me if he got a heart. All I could do was nod and then I started to cry. My baby was getting a new heart!!

I called Shane. He was on his way to the airport. When he answered I told him we got the call. He didn't understand what I meant. All he knew was that I was crying. He panicked and asked me what was wrong. I told him... WE HAVE A HEART!!!

We got to the hospital about 10. Around midnight, they figured it would still be a while so they told us to go try and get some rest. We came back to the room and while we were laying down, Lilly woke up and saw her Dad. She then stayed awake for the next 3 hours. She finally fell asleep and then the hospital called and said to come back around 4am. He was suppose to go in about 5:30am but it kept getting postponed. We could never find out if they had actually seen the heart or if there was a possibility it could get called off. Around 8am, we heard they still hadn't seen it then 5 minutes later, they had and were on their way. Talk about a Roller coaster!!
Noah was wheeled into the operating room at 8:30 am. We waited in a family room and the transplant coordinator came and gave us updates every hour.

He did really well and we got to see him at 3:55 pm. He looked so sick. So many drainage tubes and wires. But here was our baby with a NEW heart!

He has had his new heart for 5 days now. He's doing about as expected. He was so sick before that now that he has a healthy heart, we have to wait for the other things to heal (like his lungs and his stomach) and wait for the heart to recover from being cold for so long. The Drs are confident that he will start making major progress within the next few days and he'll be released to the Ronald McDonald house soon. Then, if we don't have any rejection episodes, we will get to go home to Salt Lake in October.
I am so thankful my little man has a new healthy heart and that Shane was here when he got it. I am thankful for all the prayers and faith on his behalf that got us this far. And I am eternally grateful to our Donor Family and difficult decision they made to help save my baby's life. This past month has been a very surprising rocky experience. One I never would have imagined that I would experience. But it has strengthened my faith and enriched my gratitude. And when Noah grows up, I will forever tell him the story of how he was in the prayers of so many and received the greatest gift ever before he was even one month old.
Happy Birthday Noah!! Your first month has been so tough. But your strength has taught your mommy so much and you have already made my world a better place. I love you so very much sweetheart and I can't not wait to hold you and kiss you and give you all the love you deserve.

1 Month old and a new heart! You truly are my miracle!

Minutes after Noah was born. This was the first time I ever got to hold him.

Only a few days old.

While at Primary's we weren't allowed to hold him or disturb him.

When he got to Denver the first thing they did was let me hold him.

He had only been in Denver a few days; he was so strong.

Several days after getting his new heart. The drainage tubes had already been taken out and his color was looking so much better.

Growin Like A Weed

2010-06-12T20:31:00.000-06:00

A recent picture of my 3 year old big boy.

Happy Birthday Mr. Magoo

2010-06-11T23:09:00.000-06:00

My Dearest Noah,

Three years ago today you entered my life and everything changed. My heart doubled in size and I experienced an instant unconditional love that I had only experienced once before. From the moment I first saw you, right down until this evening when I kissed you goodnight, you have taken my breath away. I am amazed at all you do and grateful for every single moment of every single day that I have you in my arms.

I am honored to be your mother. You have been a blessing to me in so many different ways.

I love your hugs and kisses. When you wave to me and blow me kisses my heart melts... every single time! I love watching you play and throw balls. It's insanely cute how much you love cows and moo every time you see one on TV. You are all boy in the things you like and how you play but you have the sweetest heart and tons of love for everyone you know. I am not alone in craving one of your many hugs and sweet kisses.

Never forget that your Mommy loves you, always and forever. You are my little buddy and I am excited for all that the coming years have in-store for you.

You are perfect in every single way and I would have you no different than the way you are.

Love,

Your Mommy

A Special Offer

2010-03-24T19:02:00.000-06:00

I know many heart patients have sensitive skin. I don't know if it's due to the medications or just the body acting out under so much stress. I just know that Noah has always had extremely sensitive skin and eczema. It's both dry and sensitive. He even gets red marks just by touching him. So I have to be very careful what I use on him. One product I love and works great is Skin MD Natural. It's a shielding lotion. It's super thin, light-weight and non-greasy. You can get it with or without SPF 15.

Because I love this lotion so much, I wanted to let you know that over at my other blog, Skin MD Natural has given my readers a discount code for 20% off your purchase... but only for the next 30 days.

If you already love Skin MD Natural or are wanting to try it out now you can get it cheaper. Visit this post to get the code.

I Need Some Advice

2010-02-25T21:09:00.000-07:00

Back in October of 2008 I finally found my words and wrote a letter to Noah's donor family. While I respected their privacy and feelings and knew I may not hear from them, I have to admit that I hoped that I would.

It's been over a year now and I have never received any correspondance from them. That's okay though. I came close enough to losing a child (and have lost those who I loved very deeply) to understand that it just might be too much. But now, I find myself wanting to reach out to them again. Not only to express my grief for their loss and my gratitude for their gift but also to show them how happy Noah is. How much he enjoys life... the life he has because of their selfless gift.

But I am torn. I don't want to push it on them if they aren't ready. I don't want to cause them more pain.

What should I do? Do you think it would be okay to send another letter or should I wait and see if, in time, they try to contact us? I would really appreciate your thoughts on this.

Knock Knock

2010-02-17T22:37:00.000-07:00

Noah's new speech therapy over at the Scottish Rite has been going great! I have been incredibly impressed and I even went it with high expectations. His therapist, Helen, has helped Noah make "talking" fun. He's playing along and trying very hard.

Today he knocked my socks off. Our small exchange went something like this:

Noah: Ma Ma Ma Ma!!

Me: Yeah, Noah?

Noah: Nah Nah (Knock Knock- as he pretended to knock on a door)

Me: (after I overcame the initial shock) Who's there?

Noah: Ta

Me: Ta who?

Noah: Ta Da!! (and he burst out laughing)

He went on to tell me many more made up Knock Knock jokes that he has picked up from Lilly over the past few days. Man, did my heart swell about four times its size.

He didn't say any complete words but he did say knock knock two times in a row (which is a big deal for him) and it was a coherant exchange that made sense and that I could understand. Such a very big deal.

So we spent the rest of the day calling Daddy and Nanny and telling them jokes... which Noah thought was so funny and which made me so very proud.

There Really Are Just No Words

2010-01-28T18:02:00.000-07:00

I had to get up super super early this morning to take Lilly to her Cardiology appointment. We both had ECHOs today to make sure we don't have any form of CHD. I am very pleased to say that we were both cleared. Healthy hearts for us!

But that's not what I wanted to share...

Afterwards, I was so tired. So me and the kids decided to turn on the TV and lounge on the couch for a little nap together. Noah and I slept while Lilly, and her never ending supply of energy, did her tinker stuff all over the livingroom.

When I woke up, Noah was cuddled next to me under the blanket. He loves to lay under blankets with me. If I ever sit on the couch he will go grab a blanket and come sit next to me. He then woke up and went on got a small ziplock baggie of Kix.

He laid there all snuggly, opening his little baggie, and snacking on Kix while we watch Curious George and giving me kisses over and over and watching him about made my heart explode.

He's 2 1/2 and more monster and monkey than little boy but he is the sweetest thing in the entire world.

To remember seeing him a sick teeny little baby and then try to match that up with the big boy I see now almost doesn't make sense in my mind. I am filled with this overwhelming Mommy Pride when people ask me how he is doing, after everything he has been through, and I can tell them he is doing fabulously.

But you know, I still get very emotional when I think or talk about the experiences we had when Noah was born. That wound is still tender and I am still very sensitive about it. It hurts me to think about this precious boy ever being sick and in pain. I try not to think about it too much. Life moves on and we have been given this huge gift of life and time together and I refuse to squander it in the what-ifs and has-beens.

Each new day that we have makes my thoughts about Noah's donor family even more tender. From the moment I received the call that Noah was getting a new heart, I have grieved for them. I think about their loss every day. I think I grieve for them more now than I did in the beginning. Back then, my joy was so profound over the life given to my son. Now that I have had time with him, gotten to know him, and experience the joy he has brought into my life, I realize even more profoundly exactly what they have lost. I continue to be amazed at the courage it must have taken to make the decision to donate right in the midst of their sorrow.

Really, there are just no words. No words to adequately describe my gratitude. No words to adequately describe my sorrow. It's been an experience like nothing I could have imagined. And yet, I wouldn't trade what I have been given for anything.

School and an ECHO

2010-01-07T19:57:00.000-07:00

Noah started his first day of preschool today.

He goes once a week for an 1 1/2 hours. It's part of his therapy and is a class designed for 2 1/2 yr olds. I'm so excited for him to go. Right now he doesn't get any interaction with other kids his age. This will help him make friends and strengthen his social interactions. It also gives him a good opportunity to be away from Mom in a structured environment. I stayed for the class today and he had so much fun. He is one of three kids with three teachers. Just enough to make friends and still get special attention for his needs.

He also recently had his first Cardiology appointment since his Cath over the summer. It went really well.

At first it was a bit sad. See, before we even got to the hospital he realized where we were going and got upset and kept telling me no and shaking his head. But since we don't do labs there (we do them at home and send them to Denver), I promised him there would be no owies. He wasn't convinced at first (walking past the lab upset him a bit) but he listened and tried really hard to be brave.

He was so good during his ECHO. Stayed very still and quiet. That helps eases my worries. Then I know they get good pictures and a more accurate look than if he's wigging out. Then we went into the appointment and played with bouncy balls while we waited for the Doctor.

Everything was great. His ECHO looked good and even though he was sick his lungs sounded good. I even found out that even though he spent a great deal of time in the 3rd percentile for weight and height, he has now made it to the 75th percentile for height and 60% percentile for weight. Music to a mothers ears!

That said, the Dr said it was time to cut the carnation bottles (not necessarily the carnation's part but definitely the bottle part). Problem is, that's his crutch. It's become a comfort thing. I always give in because he needed the nutrition. But Doc says he won't starve now and he should come off. I have since resisted giving him one for about 5 minutes of ~~tantrum~~ begging before giving up. I will try... just not yet.

We had a wonderful holiday and Noah's progress and health made it even more beautiful. We have so much to be thankful for.

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.