Noah the New Hearted

My favorite blogger Jenny created this wonderful tribute poster for Noah... (yes, she is an Angel). It looks a little small on this page so just click on it and it will become bigger so you can read it.

P.S. Don't forget to stop by Jenny's blogs and leave her some love; aka comments! Jennyupthehill and GusGang.

Noah's Progress

Noah is doing great! We are slowly weaning his O2 and hope to have it off before we go home. He's making huge progress with his physical Therapy. We had an appointment today and don't go again for 2 weeks but his Therapist said she wouldn't be surprised if he rolled over by then. And today we made MAJOR progress on eating. Last Thursday at his eating therapy we tried a new bottle. It's the type of bottle they use on infants with a cleft palate. It's just easier to suck and has a variable flow. But its been working good. He's been using it off and on all weekend but hasn't been able to take a full feed from it. Then I made the mistake of giving him some meds in his mouth (I really wanted the feeding tube gone) and that made him so mad his puked and wouldn't even let me put his paci in his mouth the rest of the night. So I've decided to work on getting all his feeds by mouth before trying the meds. Then today, he woke up from his nap and took his entire feed (all 80 cc's) by mouth!!! He had to burp a few times and needed a sugar shot several times, but he actually ate the whole thing and in only 20 minutes! I was so proud I had to call Allison and his OT Therapist and brag. What a good little boy! So we are definitely on our way to being tube free.

Also, our current GO HOME date is scheduled for October 25th. We'll go to clinic in the morning, be cleared by the afternoon if all is well and we will drive home the next day (the 26th). The idea of "home" has become such a figment of my imagination. I almost have to ask myself if it's really there. But I am SO excited...

One more thing.... I recently found out that my Aunt Ann is very sick. She had to have surgery and there were some serious complications and she can no longer talk and is paralyzed. I don't have many details, I just know she's in serious need of blessings. Please keep her in your prayers. She is such a wonderful sweet woman and her family loves her very much. And I would very much appreciate your prayers on her behalf.

Much Love,

~Crys

My Baby is a Junkie

Since Noah was on a vent for almost the first two months of his life, he never got to taste anything. When he was allowed to eat, it was through a feeding tube. So the only thing he ever tasted was Nystatin. They give it to him to prevent Thrush and he had to stay on it for a month post transplant too. Well... it just so happens that every baby HATES it but wouldn't you know, Noah LOVES it. But, who can blame him when it's the only thing he got to taste.

Well, while trying to get Noah to suck on a bottle we discovered that he would but only if we put some Nystatin in his mouth first. Then he would suck on anything. A bottle, a Paci, yes... that too... ANYTHING. So we kept using it even past the cut off date trying to get him to eat. Well... I kept trying to stop using it and he was too smart for that. He knew what he wanted and wouldn't give up till he got it. So I decided to make some sugar water and see if I could switch him to that. For a few days I did both Nystatin and then Sugar water and back and forth. Then I stopped the Nystatin completely. He hasn't used it in over a week. Good right? Well, yes... but then we now have the problem of the Sugar Water. The little Bug loves it so much that he uses more of it then he ever did the Nystatin. He is actually smart enough to spit out his Paci and then not let me put it back in his mouth until I give him a shot (a small drop with a syringe). Now, I realize that I am helping perpetuate the problem since I keep giving it to him. But I figure he's been through a lot and he deserves a little comfort and a treat to help make up for it. But sooner or later he needs to stop. I don't want him to get diabetes or something. Or rot his teeth when they finally come in. But for now.... I have to accept that Noah is a Junkie. But I guess after all the pain meds and sedation he has been on for so long, he could be addicted to much worse. I can't really complain about Sugar water..... until he spits out his paci in 2 minutes wanting another shot. *sigh*
~Crys

P.S. But you just have to see him after he's been sucking on his paci for a while. His whole face is covered in Sugar Water. It's so cute! Since the Neoral (his main anti rejection med) causes hair growth, he has a little mustace and chin hair and it just gets stuck to his face and covered in dried sugar. Makes for VERY sweet kisses.

A Faithful Man

When Dee Dee told me that Noah would need to go back to the Cath Lab, I cried. I was so worried. I told Shane we needed to pray that everything would go ok and that Noah would be alright. Shane's response? "Forget that! I'm praying he won't need to have it done."

Well, I married a faithful man. Noah's cath visit was canceled.

We went back to Clinic on Thursday and he was doing great. Allison could feel his pulses and his top and bottom pressures were not too off and his O2 sats were great top and bottom too. So, she consulted with Dr. Pietra and he said to keep it scheduled but to come in the morning and he would examine him and make a last minute decision. So Friday morning came and Dr. Pietra looked at him and felt his pulses and canceled it. YES! I was so happy and relieved that I was almost giddy.

Now, he still has a Co-Arch, that hasn't changed. But the thought was, according to the echo's its not terribly bad yet. So the pressure mean is about 20-25. When going off pressures they don't go to Cath until it's in the 40's. Then if they were to balloon is, how much of a difference would they make? Taking it from 20 to 15? That's not enough to risk a cath. But since they couldn't feel his pulses they thought they didn't have a choice, but since they really are there... there isn't the urgent need to rush treatment. There is still a possibility that it will need to be done in the future, but there is also a possibility that as Noah grows, so Co-Arch will get bigger and not be as narrow.

One thing I did find out was that the narrowing isn't at his suture site. It's on the part of his Aorta that he was born with. This upsets me because I was told that they thought one was there and that they would use the donor aorta and replace that region as well.... guess they didn't. But I need to ask more about this because I'm not quite sure.

A few other interesting things to note:
~ Baby Beckham is now HOME!! That's right! 3 weeks after his heart transplant and he is doing great! No oxygen, no feeding tube, and only 2 meds. Talk about a living miracle! You can see this cute little bug at his website. Click Here.
~While reading Beckhams update, I discovered his has a similar symptom that Noah has been having... he doesn't pee for 8 hours or so, and then totally wets through his diapers. It was discovered that Beckham has what is called Hydroceles. What this is I have NO idea.... yet... I need to Google it and do a bit of research. But I mentioned this to Allison and we looked it up in her medical book and we now suspect that Noah also has a communicating Hydrocele. (THANK YOU Scadlocks for the information) I tried to make an appointment with urology but the soonest I can get in is Oct 24th and I hope to be packing to go home around then so I am going to wait and make the appointment at Primary Childrens in Salt Lake. The urologist that Allison consulted with said that wasn't a problem because they won't operate on that anyways until 6 months. (I am hoping they say he doesn't have it though cause I really don't want and Noah doesn't need any more surgeries). But I finally found out that he can be circumcised but not until he is one. Then he will have a surgery for it. But to avoid increasing his risk for rejection, they don't want to do anything like that until he is one year post transplant. No biggie
~I want to send a HUGE thank you to those of you who have prayed for Noah this past week. I am so sorry this post is so delayed. I had the lucky pleasure of my parents visiting and then I had to go back to work (yes, I am now working from Denver) so my time has been limited. But rest assured, it was your prayers, faith, good thoughts, and love that have once again given us a miracle. I love you all!
~Crys

P.S. Noah now has his own website. The new link is www.NoahsAdventure.com but you can continue to use the Blogspot one if you prefer. They will both take you to the same place.

Totally Terrified

It was decided on Tuesday that Noah needs to go back to the Cath Lab to have his Aorta ballooned....... I kind of suspected it in the deep dark recesses of my mind. The place I wasn't willing to listen to but sensed was there. But when they told me Dr. Pietra said Cath Lab, I still cried. Allison was off that day and Dee Dee had to tell me. She wasn't able to feel his pulses in his feet or his groin and with all the additional symptoms (blood pressures and O2 sats etc.), Dr. Pietra didn't even need to see his recent Echo to know his Co-Arch was getting worse and it needed to be fixed.

Dee Dee didn't know how terrified of the Cath Lab I am since I haven't been able to work with her since we first got to Denver. So I told her how I was feeling and that I needed her to explain to me how important it is that we do this and that we do it now vs waiting. Her response is that its getting worse and fast. While there may be risks involved (tearing a whole in his heart or ripping the Aorta or even weakening the area that is ballooned which eventually leads to a rupture) he would die without it. So he may die fixing it, but he will definitely die without it.

To explain it better, his lower half isn't getting enough blood because the part of his aorta that was sewn to the aorta of the new heart is too tight and narrow. His heart is working harder to push blood through the narrow part so his heart muscle is getting too thick. And, the blood pressure to his head and upper part of his body is too high. So he's getting bad headaches and his lower body isn't getting enough blood to heal (the villi/stomach problem, his kidneys due to the immunosupressant drugs, his horrible butt rash (which I know believe to be a bile burn, Thanks Jenny!!)). So I have a very upset, cranky, sick, and unable to sleep baby but who is also the CUTEST little bug I have seen since Lilly was little. Man... I have no idea what genes my kids are getting but they sure are cute! (I'll post new pictures as soon as I can get the Internet loaded back onto my laptop which has an SD reader. My work computer doesn't have one.)

So, the current plan is Friday at 230pm. But I am praying that at Clinic tomorrow they will have changed their mind and decided its not necessary. Otherwise, they are hoping to get him in even sooner so who knows. All I know is that I am so scared I have been sick since yesterday. I have faith that my Heavenly Father will bless my baby. And I still believe that now is not Noah's time to leave this earth. But I am still frightened at what can happen. At the pain my baby has to bear. At the possible bad news I will have to hear. I've never gotten good news from a cath visit but it has almost killed my sweet precious son. But somewhere in my heart I do feel that this will be the last step toward his recovery. That once this is fixed he will be able to finish his healing and start on his new road of life. I just need to let myself listen and feel it and not be afraid. But for now, I'm still praying..... and HARD.

Please keep him in your prayers. They helped before, they will help now. I will never be able to fully express my gratitude to my family, friends, and even the people I haven't met yet who have prayed for my little man. Please know that you will always be in my prayers.

Much Love,

~Crys

No Tubes!

But only for bath time.