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.
Friday, December 28, 2007
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.
With Much Love, Crystal at 11:11 PM
Wednesday, December 19, 2007
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.
With Much Love, Crystal at 12:30 AM
Tuesday, December 11, 2007
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.
With Much Love, Crystal at 10:01 PM
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.
With Much Love, Crystal at 1:22 PM
Sunday, December 9, 2007
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.
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.
With Much Love, Crystal at 11:19 PM
Tuesday, December 4, 2007
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!!
With Much Love, Crystal at 3:49 PM
Sunday, December 2, 2007
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.
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.
With Much Love, Crystal at 11:30 PM
Saturday, December 1, 2007
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.
Much Love and Gratitude,
~Crystal aka Noah's Mommy
With Much Love, Crystal at 9:57 PM