Today Utah celebrated its 1,000th Heart Transplant! It's a wonderful achievement brought about by the collaboration of several hospitals and teams of Doctors working together to save lives.
Kaidence, Noah's Heart Transplant buddy, needs our prayers right now. Along with her mom and dad.
When she went in to have her Heart Cath there was a problem and when they took the biopsy it accidentally damaged a valve.
You can read up on the situation over at her blog.
As you all know, I am not fond of the Cath Lab. For a Heart Mommy it can be a very scary place for your baby to be. When I went to check up on Kaidence and I saw this news it completely broke my heart. Please remember to say a prayer for them. I do believe the Lord works miracles and that Kaidence's new heart can be healed.
Healed in Heaven
Noah has a Heart Cath scheduled in Denver for June 23rd. Yes, the very same day we went to Denver last year. (But as Kim mentioned, at least this time we can go with a smile on our face and not a look of horror)
When an adult has a heart transplant, they get cath's done a lot. But they are not without risk and one of the main problems we can encounter is the veins used to access the heart get full of scar tissue and close up. Because of this, babies and children who have heart transplants don't get caths very often. The only time Noah will get one is if they suspect rejection from his Echo (which he had once after transplant... this was when we discovered his insanely high blood pressure) and for routine care. His routine caths are at the one year mark and then every 2 years.
Well, this July will be one year so we are going back to Denver.
I didn't purposefully schedule his cath for the 23rd. I called Reggie (the cath lab scheduler) and asked him to reserve us a time so I could get plane tickets and he looked at the calendar, looked to see who was available (We get Dr. Pietra again YAY!!!), and said how about the 23rd? It worked so I said ok. It really wasn't until I was typing the previous post that the significance of that day hit me.
My mind told me it wasn't a big deal. Noah is healthy, things are good. But my heart wasn't listening and started beating a million beats a minute. I tried not to remember all the horrible experiences I had with the cath lab before (how sick Noah got, all the bad new I received, always having to wait alone) but I just didn't have that kind of control for a while.
I felt so stupid and weak. I knew I was over reacting. But it wasn't ME! It was my body. And I kept thinking about how after his post transplant blood transfusion we ended up back in the ICU in the SAME BED he had been in when we first got there. It's like we came around full circle... and here we are coming around again...
So, while yes, I had a moment yesterday, I am so thankful to be going back HEALTHY and coming home only a few days later. I am looking forward to them giving us the all clear for the first year precautions and knowing that our clinic visits will be reduced, his med level will go down, and we won't have another cath for 2 years.
When I think about it now... June 23rd, 2007 was a good day. It was the day my son went where he needed to be to get a new heart in only 12 days. June 23rd, 2008 will be a good day too because it will be the day they tell me his heart is still beating strong.
Noah's Heart Cath has been scheduled. We go back to Denver on June 23rd... oh my goodness... I just realized that was the day we went to Denver last year...
I'm going to have to finish this post later.... Sorry.
If you have read Noah's Adventure before, then you know how much I LOVE this poem. I love it so much I have it posted in the side bar so I can read it every time I come to look at the pictures of my sweet Little Man (yes, I visit my own blog to see pictures of my own kids and I am not ashamed).
When I first read this poem (I found it on a random heart blog that I can't even remember and it didn't have an author listed so of course I "borrowed" it) my heart lept from my chest. I know that may sound a bit dramatic but it was as if someone had looked into my soul and felt my pain and my joy and wrote it in words in a way I was too desperate to adequately express. Even how it says another heart baby earned her angel wings... and I ran to my baby's side... I remember the day Onyx was healed in heaven and how I sat near Noah's side in the ICU and cried. I just held his little hand...... (is it possible for a memory to break your heart all over again?????)
Anyways, this poem was the written expression of my soul at that time. I always wished I could find the author and thank them for sharing such a beautiful thing.... instead, she found me.
The other day I received a post from Stephanie Husted. Her son Braeden was born with HLHS and is now doing well post Fontan. She wrote this poem on Mother's Day 2005. How it became loose on the Internet and then found its way into MY heart only God knows... but I do believe it was inspired. And I want to publicly THANK her for sharing her wonderful talent.
You may read this and think I'm making a big deal out of a small thing... but until you have been there you will never know how finding an expression for such a feeling really is a big thing. So thank you Stephanie. And many prayers and blessings to you and your family and your precious Braeden.
I found a link to this article on my Sisters blog. It really got me thinking.
While I find GREAT peace and comfort in recognizing and remembering all the blessings we have been given over this past year and to see Noah and how far he has come and know what a miracle every day is... I also now know that once an illusion is broken it can never be made whole again.
My faith gives me a huge safety net. It gives me hope and courage and comfort and a determination to face each day come what may. But at the same time, I am only mortal and full of weakness. Weakness that I believe any woman inherits the moment she becomes a mother. And now, after all we have been through, that weakness feels magnified and at times I have to fight it from over powering me.
The article says: In times of crisis, the brain goes into protective mode, a kind of extended present tense intended to get you through danger without wasting energy or emotional resources. After all, there is no evolutionary advantage to worrying about the future when the future may never come. Once the danger has passed, though, you have all the time in the world to feel - and you do.
I've been told that because we came so close to losing Noah so many times, our bodies experienced the feelings associated with it and they don't really know they difference. It's like our bodies remember those feelings and think we did lose him. That's one of the reasons Post-Traumatic Stress sets in.
So while I thank my Heavenly Father EVERY DAY for my precious precious little man, I also remind myself of all the miracles I witnessed, of how I personally saw the hand of the Lord in the events that took place. I remind myself that in spite of all the pain that the past year has given me... it's also given me a life time of JOY. So once the danger has passed and you have all the time in the world to feel... I chose to feel joy.
And while it still might not be an easy road and I still fight weakness I am taking each day come what may.
Noah went to PCMC for his Transplant Clinic again today. And ALL IS WELL!!
His echo looked great, his heart and lungs sounded great, his blood pressure is good, his profusion is good, he is gaining weight, all the nurses LOVE him and his hair.... do you want me to go on? His cyclosporin level is perfect. On the new testing its 92 which is anywhere between 120 and 180 on the old testing. Denver wants his level between 100 and 150 so I think we are close enough. Now, we don't go back for 4 weeks!!!
His poop is also normal now. I don't want to jinx him, but he hasn't had a mucous poop in FOREVER! He's eating baby food solids and doing so well I am thinking of starting him on some finger foods and seeing how he does.
He is rolling over and standing up great, but he refuses to sit up. He has the muscle strength but is lacking the know how and coordination. So we are uping his OT visits from once a month to once a week. I still haven't heard from his PT since January and I even requested a new therapist but haven't gotten an update.
He is saying dada and lots of ga's but that's about it... beside his screaming. And yes, I said SCREAMING! He doesn't cry (all the time) but he does SCREAM if you are not paying him the attention he thinks he deserves.
One nice treat at his clinic appointment today was I finally got to meet Kaidence and her Mom Shauntelle today. We happened to run into them and can I just say... Kaidence is SO cute!! She is adorable in the pictures on her blog, but she is even cuter in person (She takes after her mom who is beautiful)!! I wanted to squeeze her... but being a heart mom I know all about HANDS OFF!!! Shauntelle was also so very nice! It was such a pleasure to finally meet them. I wish them the best of luck as Kaidence has been having some issues with her white blood count. OUR PRAYERS ARE WITH YOU SWEETIE!!
I also got to see Monica and Mackenzie again (our Heart Transplant buddies from Denver. They were at the RMH with us.) Mackenzie is looking SO good. She promised she would come over and play with us sometime soon. And it was wonderful to chat with Monica. I really like her. And her hair looked so great today! She has the best natural color!
So, that's the Noah update. He really is doing SO well.... I couldn't be more grateful to my Heavenly Father for blessing us with so much. And to everyone for your continued prayers and faith on our behalf. It really has helped us through this past year and given us the strength to make it through life's bumpy road.
Much Love to All,
I'm a slacker. I still haven't taken any pictures yet. But since I have the rest of the week off work, I will get some taken and posted this weekend!
So you know, though, Noah is doing great! He's eating like a champ. Once I started mixing in fruits and veggies with his oatmeal... he will eat them. So I figure I will give them a try by themselves again soon.
He's rolling all over the place and when he's on his tummy he kicks and kicks so fast... if he could just roll into a ball instead of balancing on his tummy he would be crawling in no time.
He is also totally in love with Lilly. The other day he was crying because I left the room (oh, yes.... separation anxiety at it's finest) and I asked Lilly to go give Noah kisses. She went in and kneeled down next to him and started talking and he just burst out laughing. It was SO cute!
He got his most recent and hopefully final synagis shot on Monday and he has his 9 month well baby check up tomorrow. Can you believe it? Yesterday Noah turned 9 months!!!
I promise to post pictures soon.
According to the recent poll, more people thought that Noah's hair at least needed a trim. So that is what he got. Yesterday I pulled out the scissors and trimmed his hair (big sissy Lilly got a trim too)!
Stay tuned for pictures.
Yesterday was a different milestone of sorts... Noah went the whole day and only pooped once! All day I kept waiting for the inevitable stinky pants... but it never came.
Even when he woke up this morning there was no poo.
But after he ate, he finally went. And get this... it was the FIRST brown poop he has EVER had!!
I guess we are a little too excited about poop at out house.
No news is good news right?
Yes, this time it is. Noah is doing great! He started acting normal again and eating like a champ. He also started rolling over both directions. He LOVES his new found freedom. He also realized he could use his voice for more than just screaming. He is now starting to jabber all day. And like to do it REALLY loud whenever I am on the phone.
I posted new pictures of him over at Memoirs of a Mommy. Go check them out!
P.S. I just went in to get Noah up from his nap since he was yelling. And I instantly started to laugh... He had pulled his pants down around his ankles. Lilly can't even do that by herself! The little turkey!
Noah has very bad breath.
I don't know if it's due to his meds or his nasty formula (he still uses and will only eat the Nutramagen) but either way... it's gross. Sometimes I can't quite figure out what it smells like but yesterday it smelled like the cheese you get in the handi-snack cheese and crackers. Quite foul when it's coming from your child's mouth!
I've tried wiping out his mouth (gums and tongue) with a wet wash cloth but it doesn't help. I would think maybe he had thrush but I don't see any sign of it. (Or I would give him the Nystatin he used to LOVE).
Shane says we need to Binaca the Baby... I can just imagine how well Noah would like that!
***UPDATE***
I just put a little Nystatin in his mouth and guess what magically appeared??? A white rash all over his tongue! He DOES have Thrush!! I am totally grossed out. But hopefully this means his breath will get better.
Today, when I changed Noah's diaper, it had mucous and curds that were not very colorful. HOW IS THIS POSSIBLE??? He had an abdominal ultrasound on Friday and there were NO blockages!
Good Grief Child!!
I love you so much but you are such a mystery!!
I am exhausted!
I had to take Noah up to the hospital today. We figured he had ear infections and to play it safe we figured it was best if we verify it rather than just calling in an Rx. Well, it's a good thing we did cause it wasn't his ears.
So we called Cardiology and Dr. Everett wanted to see him right away. So we (actually ME carrying Noah's heavy car seat, my purse, and the diaper bag cause the stroller was in the other car) walked over to PCMC. He had an Echo which took forever because they kept wanted to redo it different shots since they looked different than last time (of course THAT was nerve racking) then we had an EKG and blood pressures, then we had a chest x-ray.
Everything was fine. In fact, his heart wall is getting thinner finally. So it's NOT rejection. But it was a good 3 hours of silent panic.
So, since something is still definitely wrong, we did an abdominal ultra sound too. Just to make sure his liver was ok and there weren't any stones left behind. We checked his kidneys, pancreas, liver, bile ducts, etc. All was fine there too.
So, we still have NO idea what his deal is. But we are going to go check tons of labs and his med level again on Monday.
They test his Cyclo level using a different method now. And they say it's about 20% lower than how the old test would show but when we were doing both it was always more than 20% lower. Well, right now Noah is sitting at 80 on the new test. He needs to be 100-150 on the old test. So he is sitting at 100 if the new test really is 20% lower. But since it's normally a little more, we are going to raise his dose.
I know Denver likes to keep the med level as low as possible and Primary's keeps them MUCH higher and I don't want to raise them to PCMC levels, but I don't want him sitting on the lower threshold right now either. I figure it's better to be slightly higher during this first year then after that, go for the lower end. So we are changing his dose a bit. Which makes me feel better.
But once Denver shows his one year cath and echo are all clear, I am going to try and keep his meds at the lowest dose possible to avoid the nasty side effects and kidney damage.
Anyways... I'm tired, Noah was so tired he has been asleep since the moment I put him back in his car seat. And while we don't know whats wrong just yet, at least it's NOT his heart.
I just love this little man SO much. And I think he is the cutest thing EVER!
When I am on the computer... working, bloging, researching, chatting, whatever... I always come back to this site over and over again just to see his cute picture in the header.
Does that make me silly?
Nope.
It makes me Mommy.
Noah has been awake and crying since 2:30 this afternoon. I know he is tired but he won't stop crying or should I say SCREAMING long enought to fall asleep. AND I've given him Tylenol. I don't know what else to do... *sigh*
Things ended up turning out very well...
Noah has NOT gotten any sicker and seems to be well managed with some Tylenol. He has started to eat a bit more and doesn't seem to be breathing as heavy but he still gets mad if the Tylenol wears off. So I'm sure he is still fighting something. But for now we are good.
This coming week should have been a no hospital visit week but since last week his Neoral (cyclosporin which is his main anti-rejection med) was too low, we have to have it checked again this week to make sure his new dose it enough.
Owell... at least thats a quick visit.
Thank you so much for all your thoughts, prayers, and supportive comments. It really is very comforting to me to know you are all out there keeping Noah in your hearts.
We went to the hospital again today. Noah still isn't eating very well... actually he is hardly eating. He is also breathing very fast and is extra irritable. His sleep habits are all messed up too. He is napping much more but doesn't want to go to sleep at night. (that happens to me when I'm sick too)
Dr. Samson-Fang joked with us that he always seems to get sick on the weekend. She wasn't joking either. I can't believe for how well he is doing and how relatively healthy he is considering everything that we still end up at the hospital 3 times in one week.
Anyways, she isn't sure what his deal is. He's probably brewing something and we just have to wait until he gets sicker to find out. Which will probably be Saturday Night since thats the most inconvenient time.
He might have C.Diff again. He might have something up with his liver. He might have pnemonia. He might have something else completely. These were just the things that were on the top of the list. His ears surprisingly looked fine. There was still a little fluid behind one but it didn't look infected at all... and the weird thing??? Still no fevers. Dr. Everitt (his cardiologist) said he can still get infections even though he's immune suppressed but he never seems to get them, even with RSV and Lilly had a really high fever. Go figure.
Anyways, we'll wait out the weekend and hopefully he gets better not worse. But we have to go back next week regardless so we can check his level again since it was too low last week.
Despite these statistics, newborns and teen-aged athletes are NOT routinely screened for Congenital Heart Defects and a disproportionately small amount of funding is available for research and support.
Signs and Symptoms
Parents should be alert to the following symptoms in infancy:
Some children with CHDs may not have any symptoms until later in childhoos. Things to look for include:
If your child has two or more of these symptoms, talk to your pediatrician about a referral to a Pediatric Cardiologist! Click Here for more information.
Since Noah was born with Critical Aortic Stenosis and an Abnormal Mitral Valve with Significant Regurgitation, his CHDs were unable to be fixed. Instead, he required a Heart Transplant for a second chance at life. So in bringing awareness to CHDs we also strive to bring awareness to Organ Donation. Please visit the National Transplant Society website and the Donate Life America website to learn more about Organ Donation and to sign up to become a Donor. Please don't take your Organs to Heaven. Heaven knows we need them here!
And a special Thank you to Noah's Donor Family. Who during a most dificult time, chose to donate life and gave Noah a new heart.
Noah's appointment today went great! His liver tests all came back normal. His heart looks great... there is NO CoArch, his EKG was normal, and he wasn't upset when they pressed his liver. So maybe it was just gas or something.
So Noah continues to do really well. His next appointment will be in 3 1/2 weeks. That will be the longest stretch between appointments then we have ever had. I wonder how crazy I will be making myself by then??
This past weekend I wouldn't allow myself to think about todays appointment. I didn't want to get all worked up for nothing. And now that I know it was nothing I am really glad I didn't.
But Thank you for your prayers and support.
So tomorrow I will be taking Noah to PCMC first thing in the morning to check med levels in addition to checking his liver function. Then, we'll do his regular cardiac check up... echo, ekg, etc. Hopefully everything is ok and this Liver thing was just a random fluke that has already resolved itself. Either way, I will update once I get home.
Thank you for your prayers though. I can't tell you how much I rely upon them to help me stay calm when I am worried about something. Not to mention that I know they have and continue to work miracles for my little man (chubby cheeks and all).
Have a great night! I'm off to bed.
I Spoke with Emily (the Transplant Coordinator) this morning and after she discussed with Dr. Everitte. They decided that if Noah looked or acted sick then I would need to bring him in today. But since he seemed ok, we are going to switch are weekly appointment from Thursday to Monday. Then we can check his med level, check his liver function, and get his echo and EKG.
I really hope it's nothing, but it sure can be unnerving. But I guess this is just the road of a transplant. Every little cold can be something bigger, every infection can lead to rejection, and every unexplained pain could be a result of heart function. I assume with time I won't get SO worked up about it because we'll have many "false alarms" under our belts but for now, it's always a bit scary.
I'll definately post an update as soon as I know what they say. But I don't think we'll have lab results back until Monday evening or even possibly Tuesday.
Today Noah went to see Dr. Samson-Fang for his next Synagis shot. The shot part was easy. Of course he cried a little. But I think it was more from having to be held down than the actual shot because as soon as I picked him up, he stopped crying. (He doesn't like to be manipulated...just like his mom.)
What was interesting was what happened before the shots. Noah had been sleeping in his car seat when we got there. The time came to weigh him so I went to get him out and could tell he had pooped. Very stinking. So I pick him up and hold him upright against me so I can lay him down on the counter. As I lay him down I see yucky poopy diareah all over his leg and the only onesie that I brought. Then I look down and there was poop all over my boob. On my shirt of course. But it wasn't just a smear. There was actually a good deal of poop on me that had to be scooped off. It was VERY nasty. So I cleaned it up but then I was too stinking to wear it so I took it off and just wore my jacket as a shirt. Unfortunately, Noah had to wear his stinky onesie home but I did try to clean it up as much as I could.
The next turn of events might end us back in the hospital tomorrow. When the Dr. was doing his physical, he started crying when she pushed on his liver. Normally this doesn't bother him at all. The only time it has ever hurt him was when he had a blockage due to his gallstones. So her hypothosis was it could either be a missed GallStone, a random Virus thats in his liver, or a backup of fluid from his heart and lungs (He had this before he received his transplant since the Aorta was too small to push all the blood out so it backed up into his lungs and liver). So that just gave me a HORRIBLE thought.... I was told in Denver that Noah had a CoArct (a narrowing of his Aortic Arch near where the new heart was sewed to his exsisting Aorta). *remember the scary I hate the Cath lab post? But lately PCMC hasn't been checking it because the way they do their echo's they couldn't show a significant Coarch so they stopped looking for one. But if he does have one and it's getting worse, it could cause the fuild to back up and flood his lungs and liver and lead to heart failure..... Oh... gonna need a zanax tonight.
Anyways... It's probably nothing, but I have to call Cardiolody tomorrow to see if they want to see him right away or if it can wait till our schedule appointment on Thursday. Either way we will be checking his liver function labs.
Oh... one last thing. He was upset earlier because he was tired and I had to wake him up for meds... and as he cried I saw two little teeth trying to pop through. They seem to come and go since the Neoral thickens his gums and makes it harder to teeth. So maybe they will pop through this time... or maybe we'll have to wait.
It took me a while to change my mind but I decided that I wanted a new look for Noah's Adventure. This new look is very symbolic of how things have changed since when the blog began.
I started this blog at the beginning of June. Before Noah was even born. Back when we had no idea what the future had in store for us.
I feel like we have come such a long way. I remember anticipating Noah's arrival with great excitement. I couldn't wait for him to join our family. When he was born my Joy was overwhelming. But then it was clouded by a pain I had wished I would never have to endure.
The days following were very hard as we struggled watching Noah suffer. As we watched random and rare set backs hinder his progress. But the days brightened as Noah improved.
And here we find ourself back to our regular life. It's different that we thought it would be with Noah's limitations and all his Dr visits. But I wouldn't change it for the world.
But in honor of Noah's progress, I thought it was time to update and change his website.
I hope you enjoy it and continue to stop by and check on his progress. I find great support through blogging and all the kind and support comments that everyone posts. So THANK YOU!
Noah is doing well. The antibiotic seems to have really helped. He has a few more days to go to make sure they stay clear though.
One problem though... It brought back the really acidic poop that is burning holes in his poor little bum. I am trying everything and its just not working so we are back to the Lyticain cream and the Ilex. Only problem with the iLex is it makes his bum cheeks stick together. I try really hard to put the vasaline there so it won't but it doesn't help. I wonder if that will keep him from being able to poop is he needs to?!?! ;)
But he really is doing so well. You just can't tell all that he has been through just by looking at him. He also has more personality than I have ever seen in a baby his age. He honestly thinks he is funny. He does stuff to make me laugh and then starts laughing himself. Or he will cock his head and give you this look than slowly desolves into a little grin and then he just bursts out laughing. It's the cutest thing I have ever seen.
I just adore him. He brings me SO much joy. And even though the past 8 months has been hard, I wouldn't have him any other way. I love that he is so special. That he is my miracle. I wish I could take away his suffering. But since this is the road we have all been called to walk... I am honored to be a Heart Mommy. Especially since I'm the Mommy to a BEAUTIFUL Heart Baby.
