A Very Merry Christmas!

We had such a wonderful Christmas. I don't have my pictures available just yet, but I plan on posting them to Memoirs of a Mommy some time this weekend so go take a peek when you have a minute.

Noah is doing wonderful! Even with the nasty cold I gave him. Yes, I gave it to him. I never leave my house except to go to the Hospital and I am very persistent in washing my hands and disinfecting my house, but then a few days before Christmas I decide to have some "me" time and I went to Walmart at about 10pm. I was able to pick up a few surprises for Shane but I came home with more than I bargained for. So unfortunately, Noah got a undeserved and nasty Christmas gift. My cold. But even with that, he is doing great!

He is eating so much more than he ever has before. He actually gained a whole pound in ONE week! That is just amazing. He now weighs 15 lbs 5 oz. For a 6 1/2 month old that is still very small but when you look at him he is just chubby and healthy looking.

I thank Heavenly Father everyday for this precious little booger. He loves to play. He shakes his rattle so hard sometimes that he smacks himself in the forehead. He doesn't cry but looks at it like "why did you do that you dumb thing!" then shakes it again. He kicks a lot but still hasn't discovered his feet yet. And while I've seen him move around the floor a little from kicking so much, he still isn't even rolling to his side yet. But OT and PT will start back up now that the Holidays are over and he has had time to recover from his surgery.

I still have one thing that is weighing on my heart though. Every morning when I feed him and give him meds and every night when I do the same (as these are the only quiet times we have together) I sit in the chair and rock him and think about the heart that is beating in his chest and keeping him alive. I think about the child it used to belong to and the family who had to say good bye to that baby. I am so over come with gratitude and so humbled by this miracle. I want so badly to write to them and share my thanks. I want them to be a part of our lives so they can see the legacy of their baby live on through Noah... but then I let my worldly, anxiety ridden mind create all these scenarios and it keeps me from writing. I am SO afraid of writing something that would cause this generous family more pain. What if I write it and say something to the mother but the circumstances were such a tragedy that the mom passed too. That's just one example of the craziness that I think of. I know it's not logical. But that doesn't seem to help me much. I just wish I knew the circumstances better so I could prepare my letter more appropriately. I just have so much gratitude I can't simply say a quick thank you. But anymore than that and I might cause them more pain. Well, this post has become much more than I intended. It's just been something that has been on my mind every single day. I guess when I am really ready, the words will come and I will be able to say what I need to say. And when I do, I really hope that our Donor Family finds comfort in knowing what a gift they have given us. I really hope they are a part of our lives.

I also hope you all had a Very Merry Christmas. Since it's the season for giving, remember to give to those who are in need. You can be someones miracle with just a small Act of Random Kindness (Noah's ARK).

And one final note... and a wonderful note it is!

One of Noah's Heart buddies Kaidence (who we learned about through the CHD support group Intermountain Healing Hearts) received her NEW HEART a few days before Christmas!! You might have heard about Kaidence's story on the news a while back. She was the first infant in Utah who was able to receive the use of a Berlin Heart. She is now also the first child to use a Berlin Heart and then receive a transplant. What a miracle she is. Please visit her blog and see how well she is doing and also, please keep her in your prayers. Recovering from a Heart Transplant is an up and down process (as we know all too well). But she is doing so great and we are so happy for her.

You Were Right On The Money

Today Noah had a check up with Dr. Downey (who was VERY wonderful so he must have forgiven me!)

Dr. Downey said Noah was doing WONDERFULLY! His incisions are healing nicely, his circumcision looks great! (He said that most look really bad for about 3 or 4 weeks but Noah's looks great after only 8 days!) He also mentioned that the pathology report came back and was positive for scaring and gallbladder disease and it proved that it had been having repeated blockages. VINDICATED!! After being told it didn't need to come out and yet, I insisted.... Dr. Downey told me "You were right on the money. It definitely needed to come out."

Noah really is doing great. He has already started eating more (tons more), he doesn't need any sort of pain medication (not even Tylenol), and we switched back to the Nutramigen to give his bowels time to heal from the Diareah so hopefully we can switch back in a month or so.

Dr. Downey also mentioned that we don't need to do anything for Noah's communicating Hydrocele unless he develops a hernia. Which I really doubt will happen. But if his scrotum still grows and shrinks when he's a year, I should give him a call and then maybe we will look into fixing it. But for now... there is absolutely NO reason for us to even worry about it. So that was a huge relief.

Other good news... Noah's Cyclo level is back where it is suppose to be. Turns out we must have had a bad bottle. I have to call the manufacture and send it to them for testing. Because as soon as I had switched bottles his level almost went to zero even though we had increase his dose dramatically. But now with a new bottle, he is back where he is suppose to be and there doesn't seem to be any signs of rejection that was caused by the low level.

I am interested to see what the manufacture says though.

Happy 6 Month Birthday Little Man!!

Today Noah turned 6 months old!!

Six months ago today, right about now actually, Noah came into this world and changed my life forever. I have learned more about Love, Prayer, Faith, Hope, and Charity in these past six months then I had in the previous 28 years.

Noah has earned the right to be here. He has fought a valiant fight and will continue to do so. His sweet personality has already touched so many. I am excited to think what the future holds for him. About the amazing life he has and will continue to live.

Noah, Mommy loves you more than you will ever be able to understand. You are so very precious to me.

Noah's Surgery Update

First off, so you don't have to scroll ahead, let me tell you up front that Noah's surgery went well. There were not any complications and he's now home and doing good.

But now for the story.

To begin, I have to go back to his original surgical consult with Dr. Downey. Once we decided to go ahead with the surgery I expressed my desire for a Cardiac Anesthesiologist (CA). I was told that Primary Children's doesn't require that a CA to be present for all cardiac patients anymore. But he would write on the order that he was a transplant kid and that I would prefer one but he wasn't going to make any promises. I said ok and we scheduled the surgery. Through out this appointment, Dr. Downey also made the comment that any information for the Anesthesiologist would need to come from Cardiology otherwise, he was just a middle man for whatever they may want.

The next day I spoke with Alison (Noah's Transplant Coordinator in Denver) and she explained that they like to have a CA because normally things don't go wrong, but the one time they do... you wish you had one. Well, Noah is the type of kid where if there is a .05% chance of something RARE happening, it probably will. So I decided I didn't want just anyone, I wanted a CA. So the next day at our regular Transplant Clinic appointment I told Marian, the Transplant Coordinator, that I wanted to make sure a CA was requested for Noah's surgery instead of a General A. She said ok and would pass it along. Sunday, I spoke with Emily the other transplant coordinator and I told her as well and she said ok.

Monday morning came. Noah had not had anything to eat since midnight and the pedialyte ended at 10am. We went to the Out Patient Surgery check in and I told the receptionist, the nurses assistant, and the nurse practitioner... "Do you know who our anesthesiologist is? Is he a CA? I requested a CA. Will you make sure we get a CA?" So there was NO WAY they didn't know. The NP eventually came and told me that a non CA was originally scheduled but that it was being worked out so she didn't know who would be assigned.

Then, up walks the Anesthesiologist. He introduces himself and I ask him if he's a CA. He said no. So I explained how Noah was a Heart Transplant Recipient and that I had requested a CA. So he went off to see if the one he saw walking around could do it. As he walked off, I thought to myself that I hope he could if only because this guy just kind of rubbed me the wrong way. Then up walks Dr. Downey ready to go (it's about 2pm) and as he's explaining it to us, the GA came back and said the other guy wasn't available. He tried telling us how all these hospitals do things differently. And Primary's was one that didn't require a CA. I thought to myself, well... if I thought you were the better hospital I would be ok with that. But since I don't, I prefer you do it the other way! So we talked about it for a few minutes and Shane and I just decided to go ahead with it anyways. But Dr. Downey was PISSED! He said that if I had wanted a CA, I should have just told him that and he would have scheduled it that way. He would have had to jump through some hoops or post-poned it a bit but we could have done it. I had explained to him how everything happened and he was so mad that someone else was telling him how he needed to do things because then if something even completely unrelated happens, they are still held accountable. I understood and that's why we decided to just go ahead with it. The last thing I wanted was the surgeon to go into cut my baby open (especially his manly area) and being pissed at me. He asked me who our cardiologist was and I told him but then had to try and explain again that isn't wasn't her fault. I was just doing what I thought was best as I was advised by the Denver (specialist mind you) and I thought I had been clear on my wishes.

Well, then the GA comes back and tells us that Dr. Downey has agreed to stay late and Noah's surgery was being postponed until 6pm because he no longer wanted to do it anymore. Because we had asked for a CA if something had gone wrong, he would have been the first one blamed. So I completely understood his unwillingness to perform the surgery at this point. I was glad but also upset because I really didn't mean for this to have snow balled into this big huge deal.

So we gave Noah some apple juice (it's now 3:15pm) because he was STARVING! and I called Emily to give her a heads up. I apologized for the problems and explained that Dr. Everett might be getting a nasty phone call from Dr. Downey... etc. She assured me all would be fine and went to warn Dr. Everett.

Meanwhile, we have been at the hospital ALL afternoon. I haven't eaten all day. Shane is pissed. Noah is hungry (but he did SO well. He just couldn't have been a better baby.) Then Alison calls to see how everything went. When I told her the situation, she just laughed. I know, I must be their worst nightmare and Alison is probably so glad that I'm not her problem anymore. I told her that she'd probably be receiving a phone call telling her not to talk to me or give me their advice because they weren't treating Noah anymore. So if she saw an 801 area code, not to answer the phone.

Then Emily and Dr. Everett stopped by. I did my best to try and explain how as a parent being at Primary's and being told that they couldn't help us anymore and then sending us to Denver, then being treated and healed there, then coming back here has been very confusing. I'm trying very hard to have confidence in the Dr's and staff at Primary's. I know they are a very good hospital and when we were sent away, I was so upset that we were leaving. But now, I know Denver's cardiac transplant program is one of the best in the nation. The hospital alone was ranked #4 in the country where as Primary's was 15th. Which I know is still amazing! But it's not Denver. Now, I didn't tell them all this. But I did try to explain that it's been a difficult transition and I haven't meant to be such a problem. I just wanted to do what I thought was best for Noah. They understood and assured me that this wasn't a big deal and tomorrow no one would think twice about it. Which turned out to be true because Dr. Downey didn't even come check on us before we were discharged, he must have just completely forgot. I hope its just cause he was busy and not that he was still upset. Because I really do feel like he is a wonderful surgeon and I was and am very happy that he was the one who did Noah's surgery.

Anyways... 6:45 rolls around and the CA (who is super nice and I just got a much better feeling about him) came over. We are the last one's in the pre-op room. We discussed his history. And we thanked him for being willing to fit us in at the last moment. He totally understood. After all we have been through with Noah, he knew where we were coming from. So then he took my little man from me and walked down the hall way. That was hard. I had to repress my emotions as he carried him away or I would have been a complete mess.

The entire process took about 2 hours. Dr. Downey came out (and was very nice and almost seemed to be ok with everything... as long as he will take us, if my kids ever need surgery again I would still prefer him) and showed us Noah's appendix and gallbladder. His appendix was much longer than I thought it would be. It looked healthy and was probably about 3 inches. Now, his gallbladder was completely different. It was about the size of 3 skittles (Shane made this observation). It was scarred and had thick walls which proved it was bad. Then he opened it up and took out the stones. The large stone was about 1/3 the size of his entire gallbladder. Imagine 1 skittle packed into the space the size of 3 skittles. Plus there were 2 other smaller stones in there too. So we were reassured that having this done was definitely the right thing to do. His gallbladder was BAD and needed to come out. So now they will send it to Pathology to see what the stones were made of and if there was anything else we should know about it.

So, Noah spent the night in recovery. I stayed with him and Shane went home around 12:30 am. Noah did well. He had some morphine for the pain a few times and he drank some pedialyte throughout the night. I slept about 2 broken hours. And then we got to come home around noon.

He's very sleepy. And he doesn't want to eat. But he's pooping and pooping and pooping. Which isn't helping the awful rash he already had AND it's hurting his peepee. (Which looks so swollen and painful.. but much more aesthetically pleasing.) But he has pain meds and an antihistamine for his eczema which helps him sleep.

We go back for a check up in 10 days. I am glad this is all over with and I really hope that there isn't any back steps with infection or rejection now. I do believe, though, that this will really help him to feel better and finally start eating more and gaining some weight.

I want to thank all of your who prayed and fasted for him. As I have said before, the Lord has worked mighty miracles for us because of your prayers and faith. I could not be more grateful.

I'll post some more pictures of my little man soon so you can see how darn cute he is... even without a gallbladder or appendix. :) But for now, I'm going to take a nap.

Noah's Surgery

Noah goes into Surgery tomorrow (Monday at Noon). Please keep him in your prayers. It's so scary that he has to have this done so close to his transplant, but I do believe that it will help him to feel much better.

Here are some extremely cute pictures of my little man. He was very agreeable for picture time. Too bad his big sister wasn't.

Hey Mom! This picture taken is super fun!

Yah, I know I'm a stud already!

Oh, my... that was stinky!

I'm feeling much better now.

That's right. Tell me how cute I am one more time.

And So It Must Be Done

Noah's surgery is scheduled for Monday the 10th. He is going to have his Gall Bladder removed, his Appendix removed, and he will be circumcised. I don't know what time he goes in, I'll find that out Friday afternoon but they will be keeping him in the outpatient post-op recovery area over night for observation.

Then... after all the hassle of trying to get his stupid Synergis shot, I finally put the smack down on the Insurance Mail-Order Pharmacy that we have to go through to get it and it's being overnighted. So he will be able to get it on Friday before his Surgery.

Also, it seems the new non-dairy/non-soy formula is helping. His poop seems more normal. It's not as gooey (yes, gooey) and where before the smell was horrible enough I would actually gag (and I NEVER gag) it now barely smells at all. Dr. Samson-Fang said it doesn't necessarily mean he's allergic to dairy. It could just be his villi are still damaged (after the C. Diff and diareah, etc) and he's just temporarily lactose intolerant. So we are going to keep him on it a month and then once he's better post surgery, try the regular formula again. If it turns out he does have an allergy, she said not to worry as most kids out grow it by the age of two.

Tomorrow we meet with the Urologist to have his possible hydrocele looked at and determine if we need to investigate Kidney Reflux.

So... we are making progress and only 27 more days until the hectic year of 2007 is over!!

New Links

I have finally gotten around to updating my links. I've decided to keep the links on Noah's page limited to those related to his Adventure. So if I removed yours, I am truly sorry. But, you can still find it and many other wonderful links on my personal blog Memoirs of a Mommy.

I have also added a graphic to advertise my new cause. I am trying to raise money for the Denver Ronald McDonald House. They were so wonderful to me and my family while we stayed there, I want to do something in return. Please join me in helping this WONDERFUL charity continue to provide for families in need. Click the Chipin widget on the left for more details. And THANK YOU THANK YOU THANK YOU for every penny you give.

Much Love,
~Crys

P.S. I will have more information on Noah's current condition on Tuesday after his Appointment with Dr. Downey. I hope we can just schedule surgery and avoid all the additional testing.

A Special Special Thank You Before We Go Home!

Originaly Posted on October 18th, 2007
To Everyone at The Children's Hospital in Denver:

There are no words to express my gratitude to the wonderful service you have given us during the past four months. Not only have you helped Noah gain a new chance at life, but you befriended me along the way and helped me feel included in his care when at times, all I could do was watch.

Through out the ups and downs, I always felt like Noah was getting the best possible care. I appreciate that he was never just a patient. I truly believe you came to love him. That's what a Mother can only hope for when she has to leave her baby in the care of someone else.

The Doctors and Surgeons were all so amazing. Thank you for your sacrifices to become so good at what you do. It's your talent and expertise that has given Noah his second chance. Its through you, that modern day miracles are performed. Thank you for investing the time and concern into Noah and his case. Thank you for doing your best and sending me home with my precious baby.

It's was our Nurses who gave us the strength to make it each day. Thank you, from the bottom of my heart, for loving my sweet baby. Thank you for your tender touch and sweet words. For the strength you gave me when I felt weak, and the love you gave Noah when he was unable to be comforted by his mommy. Thank you for nursing him back to health and giving me the comfort of knowing he was well cared for. Many of you have earned a special place in my heart and you will never ever ever ever be forgotten.

And to the Transplant Team who has been with us from the beginning. Each of you were with us during a different part of our Journey. Each of you stood by me as I watched Noah be sick and then as I watched him get better. You will forever be in my heart!

And to Alison, who was the one who started our adventure to Denver. It was you Alison, and your kindness and willingness to answer my questions that initially helped us choose Denver. It was you who made the call I had been waiting for with each breath I took. It was you who came out of the OR to tell me my baby had a new heart. And it was you, who has continued to stand by me and help me be a good mom to my sweet baby and continues to answer my endless supply of questions. Thank you for your sacrifices that have allowed you to be where you are today so that you could help me through all of this. Thank you for loving Noah. Thank you for being my friend. And thank you for telling me what I need to hear even if I don't want to hear it. You are wonderful and I will miss you.

I will never be able to thank each of you in person, or even be able to list you here. But to the entire CICU team: thank you for keeping me stocked with Bottles and lids. Thank you for helping me learn my way around Denver, and for always asking if I wanted to go in on the lunch order. The the CPCU team: Thank you for always making sure there was someone there to hold Noah when I couldn't be there. Thank you for making sure he was always well bundled and keeping me included in his treatment. And thank you Jen, for loaning me your umbrella so I didn't have to walk in the rain. ;) To the Lab Team: Thank you for always making Noah's blood draws as quick as possible and always having a kind and positive attitude. You are always the first one's we see when we come to clinic and it's your kindness that starts the day off right. To the Clinic team: Thank you for your gentle ways each morning we come to clinic. Thank you for making the routine simple and easy to follow. For being so sweet with my little man. And a special thank you to Alice who ALWAYS put a smile on Noah's face. Thank you to Megan our Social Worker, who always stayed in touch to make sure we had what we needed. And worked things out when we needed special care. To the Therapy Group: Thank you for helping Noah learn to eat and over come his physical limitations and for teaching me the best ways to help him progress.

And last but definitely NOT least: A HUGE thank you to everyone at the Ronald McDonald House. This has been our home for the past 4 1/2 months. If it wasn't for you and the service you provide, I don't know what we would have done. We had to come here on such short notice and I had never been to Denver. It was so overwhelming. And yet so comforting to have a place that I could call home while I was here. Your kindness and genuine interest and concern are more appreciated than you could ever know. I continue to be amazed at the generosity of the volunteers and everyone who donates resources. Thank you, Thank you Thank you!!

And Thank you to all of you who I have met here at the RMH. I have made some friends that will definitely last a life time. Many of you I will never forget. I will continue to pray for those of you that are still here. That your miracle will come and the day for you to go home happy, will be swift. You have all made me a better person. You have touched my life in one way or another.

There is nothing I can write that will adequately describe my gratitude for everyone I have met these past 4 months. You have each played a part in Noah's Adventure and will always be remembered.

I ask you to please, come back here and check up on him regularly. I will be keeping his website full of pictures and accomplishments. I want you all to see the Joy you helped create.

To the world you might just be one person. But to one person, you might just be the world.
~Author Unknown.

Much Love and Gratitude,
~Crystal aka Noah's Mommy

Rolling Stones

Noah's Rolling Stones that is....

My poor little man is in so much pain. He spent the whole day just crying and suffering. We were able to get his Surgical Consult moved up a week so his appointment is now on Tuesday. It just breaks my heart that he has to wait even that long. Plus, who knows if Dr. Downey will agree to remove it or when.

On a good note... I started using cortisone cream on his rash and it improved 100% after one day. So it must have been just eczema. I have it but very mildly. So maybe it's the meds making his worse, who knows. I knew it was dry skin on his head and face. I had been doing everything possible to moisturize it to no avail. But his tummy and arms looked like a different kind of rash. But the cortisone cream got rid of it so it must have just been dry skin too. Although.... yesterday Dr. Samson-Fang did ask us to switch formula "just in case" he was having a reaction to dairy. Which is completely insane considering I do not know one person on my side or Shane's side of the family that has any major food allergies, including anything lactose or dairy related. But... I figured it was possible that the C. Diff had killed his villi again! Which would make him lactose intolerant. So I bought the $30 small can of Formula that is neither Dairy or Soy (I got it from the Hospital's Outpatient Pharmacy). I was told it was possible he wouldn't drink it because it doesn't taste very good and with his oral aversions.... but he drinks it fine. And here's the thing... He's been screaming since he started it... but I think he was on his way there before anyways that's why we had the impromptu visit with Dr. Sampson-Fang. It also has a bit more fat in it than his other stuff which could upset his gallbladder. But here's the weird thing... since he started it, his poop looks more normal. Noah has NEVER had normal looking poop. I haven't seen mucous in his poop since he started it. And lately his poop is more mucous that poop. (Sorry if your about ready to vomit. I have learned that once you become a Mom, poop is a normal topic of conversation... fine, I'll admit it, it has ALWAYS been a topic of conversation in my family.)

Anyways... I should know more this Tuesday after his consult. But I must ask... Please pray for him. He is in so much pain. He just cries all day and I know he's suffering. Pray that the Doctors will be able to fix the problems and he will be strong and come out healthy and everything will go smoothly. I would really appreciate it. The thought of him having surgery this close to Transplant frightens me to death. And because of his delicate condition, he will most likely have to stay in the PICU for observation post surgery and the thought of him in any ICU or even being admitted to the Hospital again... scares me to death. I'm hoping I can keep it all together knowing how much this will help him. Heavenly Father has blessed him SO much already, I can't see the Adventure ending now. So I do find peace in that.

Some New Pictures of Noah

These were taken this morning.

A C.Diff-erential

What a week.

Noah has spent every day this week (other than today) at the hospital or in the Emergency Room. Here is how it all went down.

Monday afternoon Noah's poop turned white with curds and mucous. His Pediatrician said we needed to go to the ER to make sure there was no blood. (Noah had also been very upset, not eating well, and had a painful liver for at least a week or so.)

We go to the ER, they check for blood, there is none so they send us home. After we got the routine Echo that is required if we ever got to the ER since he has had a Heart Transplant.

Tuesday Morning, Noah is still not well and then pukes. I called his Ped again and she wants to see him. I bring him BACK to the hospital and after she checks him out she decides he needs an X-Ray of his abdomen, stool samples, and lab work. She also says no more formula and puts him on straight Pedialyte. After all this was done, I ended being at the hospital ALL day. Later that day, his Ped calls to tell me his liver enzymes are too high and that I need to come back tomorrow for an Ultra-Sound and more lab work.

Wednesday we go BACK to the hospital for the Ultra-Sound. I also brought a diaper with me because now Noah definitely has blood in his stool so she meets me in Radiology to pick it up and ends up staying with me. Since she was there, I didn't have to wait for them to "read" it because the technician told us and also called in the attending "reader" so we didn't have to wait. Noah has 3 Gallstones. And they are NOT little. One is 1.2 cm, another is .6 cm and they didn't measure the 3rd. But those are fairly large for such a small baby. His Gall Bladder is also full of sludge (their word, not mine). It didn't look as if anything was plugged at the moment and his pancreas looked ok too. But after consulting with the GI team, Dr. Samson-Fang (his Ped) said we needed to go BACK to the ER for a Surgery consult.

We went back to the ER. We had ANOTHER echo... which I would just like to mention was perfect! Dr. Everett isn't even worried about his Co-Arch much anymore and even said that this echo was the best one yet. So finally... some good news.

Anyways, he had another echo, had to get an IV for fluid and lab tests (I requested the best of the best on the IV team because Noah is near impossible to get anything other than a heal prick out of but I was SO impressed. This girl went right for it, didn't dig, and got it on the first try. AND it not only opened for fluid but it even gave blood. I was SO relieved. I've seen experts fail at PICC and ART lines because he is so difficult!) They did more stool samples and we waited.

Then.... before the Surgeon could even come talk to me I got a call from Dr. Samson-Fang. The stool samples from yesterday came back positive for C.Diff. NOOO!!!!! Lilly was unfortunate enough to get C.Diff AND Rotovirus at the same time. C.Diff SUCKS. Terrible, Terrible diareah and it can only be cleared by a few very strong antibiotics. And that's in kids with healthy immune systems. It isn't even killed by sanitizer or bleach. All you can do is wash and wash your hands and rinse the bacteria down the sink. Anyways... The diareah was a new development so the C.Diff was probably brought on by the other poop cleaning out the good bacteria from his intestines and then him being immune suppressed... and out it comes.

So then the Resident Surgeon comes to talk to me. Now, unfortunately, I was NOT impressed with her. She had this vibe about her.... she didn't care what I thought (SHE was the professional and I was just someone who she had to talk down to) and she wasn't the easiest person to have an open discussion with. So I was VERY happy when the Attending Surgeon came in. Dr. Downey was WONDERFUL! SO incredibly nice and I felt like he validated my feelings as Noah's mom.

But back to what he said... Noah's current gallbladder attack has stopped. So at the moment he's ok. The main problem right now is getting the C.Diff under control which can be difficult since he's immune suppressed. But he didn't think it was a good idea, nor did he think it was currently necessary to do surgery to remove the Gall Bladder at the moment.

I then shared my feelings. I feel this diagnosis answers a LOT of unknowns about Noah. It explains his random spells (days at a time) where he cries and cries as if he's in pain and then goes days when he doesn't cry or get upset at all. It also explains him refusing to eat. Since it obviously makes him sick when he does. (Did I mention he drinks TONS of Pedialyte?). I also told him that while he currently is okay, I believe it was because it had now been 2 days with no formula and only Pedialyte. I completely believe that a stone had in fact blocked a duct and that's what was causing his liver pain, the bile to be blocked which in turn caused the white stools and the rash (bile salts can cause a rash when they back up in the system). I then said... I DO NOT want him to have surgery. I feel its MORE than important to do everything we can to prevent any sort of surgery until he is a year post transplant. He's not even going to be circumcised until then... But, I also don't want him to suffer and continue to have problems because we don't deal with it. As many of you know... getting your gallbladder out is almost like a right of passage in my family. I was even starting to have problems in Denver but I'm doing better now. So it's probably going to need to come out some time in the future, regardless... but I am all for it NOT being NOW!

Once he realized that Noah hadn't been on formula for a few days he came up with this plan.... We wait and treat the C.Diff. If he can make it through that without any symptoms, we will then run some tests to help create a better picture on whether or not his gallbladder is working anymore or if its gone bad. If it's gone bad, we will remove it. If the symptoms ever come back... we will assess removing it. If he starts to get sick again once he starts formula again then I need to call him and he will assess the situation and we will probably have to take it out laproscopically regardless of the C.Diff. but of course, that just makes it more complicated. But I agreed with this plan of attack and felt much better. Dr. Downey even said that he thinks a Moms intuition and feelings regarding their children are usually right on so he took my thoughts VERY seriously.

So, no surgery for now. But they were still going to admit him to treat for the C.Diff.... Hang on just a second. Why can't I treat it at home? I just need to make sure he doesn't get dehydrated, keep his bum clean and give him his meds. He's more likely to get better care and LESS likely to catch something else if he just comes home. (This is now about 10 pm). I pleaded my case and got them to agree. ONLY if I take him back up tomorrow for more labs and a Ped visit to make sure he is doing ok. I agreed. And we finally went home.

Today was alright. He has slept most of the day and I tried to re-introduce formula into his diet but he didn't want it. And it was SUPER hard to get him to take the antibiotic (not the best stuff... almost as bad as the Verapamil). But then... tonight, I finally got him to take 2 oz of straight (non-fortified) formula. He drank it and went right to sleep.... then about 10-15 minutes later the screams of pain came. His sats dropped to the 80's (I now have a pulse ox machine to spot check during the night so he can come off the O2) and he was NOT happy. When I picked him up I could tell it hurt too. The spell passed quickly and he went back to sleep. One time isn't enough for me to jump to conclusions. I didn't rush off to the ER again.... but I will mention it to Dr. Samson-Fang tomorrow. I have a feeling that he will need to have it removed sooner rather than later. Then we can get on with healing and learning to eat better.

Now on to why he probably has gallstones in the first place. When Noah was born and couldn't eat he was put on TPN. TPN is like liquid nutrients but VERY strong. It can't go straight into an IV as it would burn. It has to go in a central like. But if you are on it too long, it can cause liver and kidney damage and.... Gallstones! Noah was on it a LONG time. The whole time before his transplant and for a LONG time afterwards. So that, along with a predisposition to having a bad gallbladder.... and here we are.

So, I will try to update tomorrow on how it all goes. I do have a LOT of work to catch up on. I haven't been able to work much since I haven't been home. My boss has been SO incredibly supportive and understanding. I just can't be more grateful.

And if you made it this far and read my entire post, you deserve a treat. So get one....
Much Love,
~Crys

What's Liver Got To Do With It?

Noah is still sick. His liver enzymes are double and that along with the white stools, pain, and not absorbing nutrients, oh and I can forget the rash, they figure something is obviously wrong. Could be minor, could be serious. We spent all day at the hospital yesterday and going again today for more tests and lab work. He was almost admitted to the hospital last night but they decided to wait until after todays tests since he seemed stable enough. He's been taken off all formula and can only have pedialite right now. He doesn't seem to mind. I never knew the kid could drink so much. He LOVES is (Lilly hated it). But he had already lost some weight and he'll continue to lose with the Pedialite but I guess if he's not absorbing nutrients anyways its sixes.

I'm typing this on my phone while at the Doctors so as soon as I know more I will update. I'm just praying the figure it out and it turns out to be something minor and he doesn't have to be readmitted.

Oh one last thing... his echo's look great so it isn't related to his heart and so far hasn't caused any problems in that area.

Our First ER Visit

Last night we made our first ER visit post-transplant. The reason? Poop!

Noah has always had strange looking and very foul smelling poop. At first it was attributed to either a virus or the meds that killed off his intestinal villi and gave him a carb intolerance. When that seemed to get better and yet his poop was still "odd" we decided it must be the medicine. He's taking several serious medications that I'm sure have to mess with your gut in one form or another. Then yesterday....

Noah has been extra cranky the last several days and from what I could tell, it seemed he was having a tummy ache. This worried me as a tummy ache and poor eating can be a sign of rejection but when I mentioned it at his weekly clinic visit they said he was doing fine. The crankiness continued and yesterday out "pooped" (a small attempt at lame humor on my part) the pictures you see below. The color on the pictures doesn't give it justice. This poop was WHITE CURDS with some PURPLE CURDS mixed in. And lets not forget the green slimy booger looking stuff. Now, it can't just be me, but this is not normal baby poop! And don't even get me started on the smell. It's not normal smelling baby poop. It is by far the worst thing I have EVER smelt. And I've smelt some seriously nasty things in my life, but that's an entirely different post.

But I digress...

So I emailed the pictures to Alison. I needed a second opinion. I hate paging his PCP for stupid things and I needed to know this wasn't stupid. And since I trust Alison and feel comfortable enough to contact her (even for stupid things... Thanks Alison!), I sent them on. Now, my FAVORITE Transplant Coordinator is expecting a baby (YAY!!!) so I was worried these nasty pictures would make her sick, but she was kind enough to take a look and was as surprised as I was. She confirmed that I should in fact call his PCP.

I really like Noah (and Lilly's) Pediatrician. Dr. Samson-Fang is wonderful. So I paged her and she asked if I could send her the pictures as well. Once she had a chance to look at them, she called me back. She said that while she does everything she can to keep families out of the ER, she felt very strongly that we needed to go and just make sure that the purple stuff wasn't blood or tissue. (We are all too familiar with worrying about NEC pre-transplant so I understood her concern.)

So, I called Emily his TC here at PCMC and gave her a heads up. Gathered all his papers, packed him up, and off we went.

I was very pleased once we got there because both Dr. Samson-Fang and Emily had called to tell them we were coming and that we couldn't wait in the waiting room. So we got right in without waiting. Several Doctors came to check out the poop including a GI Specialist and he thought that since the tests showed no blood or tissue, he was fine. We could just follow up with Dr. Samson-Fang later to see what's causing it to be so weird. But he really wasn't worried at all. He almost seemed intrigued since Dr. Samson-Fang was going to send him the pictures.

We also tested his blood to make sure his Cyclosporin levels were still good in case he isn't absorbing as he should be and then we got an echo. Denver requires that anytime we go to the ER we need to get an echo to rule out rejection. So we got one and all was well. His heart looked just as it did on Thursday with no decrease in function or leaking valves. So off we went. In total we were there about 3 hours. But the time passed by so quickly because we didn't really have to wait for anything. I must say it was the most pleasant, and by far the quickest ER visit I have ever experienced. Now don't get me wrong, ER visits are never pleasant. But since all was well and it wasn't a huge headache, it was as pleasant at an ER visit could possibly be.

So, no need to worry. All is well with little Noah. He just has the strangest poop I have ever seen.
What do you think?...

The House That Love Built

While in Denver, we were blessed to have a room at the Ronald McDonald House. There are no words that can describe what this meant to me. Being away from Family and Home, it was such a comfort to stay at a place that was understanding of our situation. Where we could meet and support other people in the same situation. Where we were humbled and strengthend by the love of the many volunteers.

I am so indebted to them. I will spend the rest of my life trying to repay them for this great service. I plan on volunteering at my local RMH as soon as the RSV season is over but in the mean time, I wanted to draw attention to the great need these places are in to give this wonderful service to those who need it. They are constantly in need of various items to help the house run smoothly and to provide for the people who are staying and are not in a situation where they can provide for themselves.

With that in mind, I want to send out a request to all who read this. If you are looking for ways to show your Thanksgiving this month or for a charity to support during the Holidays, I ask that you please consider donating to the Denver Ronald McDonald House. They have many different ways that you can do this but the easiest would be a cash donation that you can make by clicking HERE. Even a small donation helps!! How wonderful would it be if the staff at the Denver RMH suddenly got overwhelmed with a rush of donations!!

You will never truly understand or appreciate what these donations provide for these families. So, please, believe me when I say it could not be appreciated more.

Thank you so much for any donations you make. It is like you are personally giving ME a gift by doing so. I know you will be blessed for doing so.

Much Love,

~Crys

Another Milestone!

Today Noah had his first Clinic appointment at Primary Childrens Hospital. Everyone was very nice but the process was not as smooth as The Childrens Hospital in Denver. I am very happy to be home... I just wish I could have brought the Hospital with me.

Anyways...

Clinic went well and I think it will only get better as they come to know what I expect and I become used to their way of doing things. Afterward, Noah had his first well-baby check up ever. So... for you mothers out there you know what this means.... Shots. Poor little thing had to get 3 immunization shots today. He did super well though. He stopped crying as soon as I picked him up and he wasn't cranky at all the rest of the day. But... the best part... Noah has now been removed from Oxygen Therapy during the day!!!! He was off his oxygen for a whole hour at the Doctors and he was in the high 90's and even 100 some of the time (when he wasn't moving his foot.) He will still stay on it at night because breathing tends to be shallower while sleeping. I am getting an O2 monitor to check him to see how he does while he sleeps and then if he does well, he can come off at night too. They also did a chest X-Ray today and the Doctor said it looked really good so he wants to check with the Pulmonologist from Denver and see what the concern is because he doesn't see anything.

So two milestone. O2 removal (my baby is finally unplugged!!) and shots. But that's not all.... I think he has two teeth trying to break through. I can see them just under the gums. So we are definitely using the Tylenol these days.

It was kind of odd though. Today as we walked across the walkway between Primary's and the University Hospital (Cardiac Clinic is in Primary's and well baby is at the U) Shane and I reflected that the last time Noah was taken down that hallway it was right after he was born and he was being wheeled by the Life Flight team. Brought back very sad memories. But all I had to do was look at him sleeping in the stroller to be filled with Peace. So of course I had Shane, Lilly, and Noah pose for a picture. (I'll post it soon.)

It's so great being home and being home with everyone. No one is missing. No one is somewhere else. We are all together. My Joy is complete.

We're Home!

I just wanted to let everyone know that we are home and safe. We are together again and couldn't be happier. Noah is currently sleeping in his new bed for the first time. I can't wait until I am in mine.
Much Love,
~Crys

Going Home

Here is my post from Memoirs of a Mommy... (since I need to go pick up Shane from the Airport and don't have time to re-type.)

~I can't believe the time has come.

We are going home Saturday morning. We have been here in Denver at the Ronald McDonald House since June, shortly after Noah was born. That seems like such a long time ago.

Since Noah came home from the hospital, we have developed some sort of Life Routine. It's been less than wonderful having us all in one room but we have managed, and managed quite well if I do say so myself. I truly believe the Lord has helped us adjust and find some sort of comfort here. So, while there are some things I will miss (All the wonderful people at the RMH and TCH, Boston Market, and the best eye brow estitician I have ever found) I could not be more excited to finally be making the trip back home.

I don't look at this past experience as a trial or a challenge. This has been life. My life. And life is full of ups and downs and walks and runs and all I can do is roll with it. I don't ever want Noah to think his life was my trial. And I truly don't feel that way. I love him more than I ever could have imagined. Shane and I fought to bring Lilly to this earth, and we fought to keep Noah here. These are our babies, our life, our legacy. And being a mom is the only thing in the world that I could ever want to be. So I will take it all. The good with the bad. Because only then will the good be so sweet.

Anyways... back to the point of this post. Shane is coming tonight. We are going to one last clinic appointment here at The Childrens Hospital, packing, then going HOME!! Then, I am taking all next week off of work and focusing on my family and enjoying our time together. So, it's unlikely that I will be posting. I might be able to get on and post a little, but just in case I don't, now you will know its because GOOD things are happening.

Much Love to Everyone!!

~Crys

Here are a few recent pictures of Noah:

He's SO cute when he's sleeping. Look how he snuggles his little teddy.

He love's playing with his toys.... and his tongue.

He didn't like the flash from my camera.

Isn't he the cutest EVER!?!?!

Noah and Friends

This is Mackenzie and her new little brother Braxton. We met Kenzie at the RMH. She recently had a Heart Transplant too. And they are from Utah!! So we are looking forward to seeing them again soon.

I've posted this picture of Noah before but here it is in larger format so it's easier to see. It's just TOO cute!! Man, he sure was mad at his Dad for harrassing him during bath time. But what are Dad's for?

A Blogger Award

I've recently been given a Blogger award by Leeann at The World: Through the eyes of me. She nominated me for Noah's Adventure but since I try to keep this blog limited to adventure related topics, I posted the award at my other Blog Memoirs of a Mommy. Please go check it out and see the cool blogs I nominated.
Thanks Leeann!

Some New Pictures

Noah and Daddy two weeks ago. Noah rolling over... I guess he really wanted that Sugar Shot.

Noah and Daddy on Daddy's Birthday (the 11th). Noah two weeks ago with his new blankey... he loves this thing.