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.

YES!!!

Noah has made some HUGE improvements this week! He has started eating 3-4 oz by mouth and being able to go about 3 to 3 1/2 hrs between feedings (longer at night). This is really good because since I took out his NG tube, he has only been eating about 1 1/2 ozs every 2 hours, even at night.

Today, Noah also ROLLED OVER for the first time!!!! I couldn't believe he did it. He also finally started reaching for toys. Shane brought Lilly's play gym so we could hang some toys up for him. He laid under it and reached and grabbed the toys for over an hour. Just as content and happy as can be. I think that since he's eating more now, he finally has the energy to do these extra things.

His swallow study is on Friday so we can learn more about his lungs. I hope that his aspiration has stopped by then but we'll see. I'm not going to stress about it until we have more data. Then we can make a decision. All I care about right now is that he is doing SO GOOD!!!

When we go home (IN TWO WEEKS!!!!) our new Transplant Cardiologist will be Dr. Everett and our Transplant Coordinator will be Emily. They just happen to be in town next week to see the new hospital and learn more about how Childrens does their transplant program. And it just so happens that Dr. Miyamoto (Noah's current Transplant Cardiologist) is friends with Dr. Everett. (Dr. Everett was the one who sat down with us and told us that Noah would need a transplant. She was VERY compassionate. I think we will like working with her.) Anyways... the point of mentioning this is because they will be coming to Noah's next Clinic Appointment on Monday. I'm really hoping that they agree to work closely with Childrens in Noah's care. I've come to really trust Dr. Pietra and Allison and don't want to lose the history that we have. Plus... there are only a few other people in the Country with as much experience as Dr. Pietra. So I definitely want the best for my little man.

I've posted more pictures on my Flickr website. So definitely go check them out. The link is off to the left title My Pictures.

In Honor of Wordless Wednesday

Check out my other blog for my real Wordless Wednesday Post. (these pics are before we removed the tube)

My Little Fattie!

Noah now weighs about 11 lbs 5 oz. He gained weight!! And Allison was SO surprised that she even gave me a High Five! We are going to try and adjust some meds so they are easier for him to take and she even said that if he were to lose next week, we could still stay tube free for now. Since it might take some time for his body to self adjust. But he is doing super!

I did tell her that once we do the swallow study, if it shows he is aspirating, that I want to know WHY. Because there are two things that are NOT an option. One.... No more NG tube. EVER! And Two.... I don't want Stopping Feeds to be a treatment. If he is aspirating then we need to know why and we need to fix it. If the nerve by his vocal cords was damaged during transplant, then we need to know what we can do to fix it. If we have to... we can do a G-Tube because Breathing is more Important than Eating (by mouth). But that needs to be a last option. He's doing SO well that I DON't want to take that from him.

Much Love,
~Crys

P.S. Please check out my Memoirs of a Mommy on a RMH update.

No NG Tube Update

It's Sunday evening and Noah is still doing well without his tube. But tomorrow will be the big day to see if he's eaten enough..... (I sure hope I haven't damaged his lungs more by doing this.)

No NG Tube

Noah took out his NG tube Friday afternoon (he must have known I was going to do it anyways). I haven't put it back in. He's eating and taking his meds (with a little trickery). I guess we'll see how well he's doing on Monday when we weigh him.

Unfortunately, I think he might be aspirating (but his reflux is gone... went the way of the NG). So, we'll see what happens with the swallow study and then we can decide what if anything needs to be done....

But can I just say... He is one cute baby! And even cuter with one less tube.

I'll post more pictures soon.

Making a Decision

If you have read the last post, then you have a pretty good idea what is going on with his lungs. Or, you know as much as we know. The question now is: do we let them do the swallow study and possibly risk having to have a G tube that goes directly into his tummy that will then cause additional problems with his desire to eat. Or Do we scratch the test, give him some time and hope his lungs heal. But see the problem is if we don't do the test, pulmonary wont treat him anymore because they believe the problem is aspiration. Either way just doesn't seem good.

The NG tube is irritating to his throat and cause extra swelling, it also keeps the valve at the top of his stomach open which allows him to reflux, which he could then aspirate. The G tube would put us in a situation where we weren't able to give anything by mouth (for fear of aspiration) so that we could give his lungs time to heal, but then he has a tube going through the skin, into his stomach. You risk infection and who knows what trouble we will have then when the time comes for him to start eating by mouth again... If you take out all his tube and just feed him by mouth (I don't think he aspirates when he does this), he won't eat enough. Then he needs all his meds by mouth and they are SO nasty that once he has it once, he won't eat the rest of the day. And I HAVE seen him aspirate his meds. Then to top it all off... say the study shows he does aspirate a little. But what if that isn't causing his lung problem. What if its something entirely different but because we got a positive, they only treat for that and don't diagnose the real problem???

I am at a complete loss. The Transplant Team doesn't want him to have it done, but the Lung Drs and OT do. And I just want to do whats best for my baby... I would say lets do the study ad just see... then I can make a decision on what type of treatment. I'm the mom. I don't HAVE to do what they want... but you can see how ridiculous that sounds.

If anyone who reads this has experience with this sort of thing or can give me a different perspective, I would greatly appreciate it. I need some extra advice to help me make my decision.

Shane and I have been praying about it. And we know the Lord will help direct us to make the right choice (He hasn't let us down yet). But other people's input can help guide us to that choice. So thank you in advance.

Dealing with his Lungs

Constant Reader: First things, first. I am very sorry for the delay between posts. As you know, Shane came to visit for our anniversary (5 years!!) and then my parents and sisters came to visit. Then add in my 20 hour work week and the new 30 minute commute to get to the new Childrens Hospital... and well you get the picture. Now on to the good stuff...

Today Noah had an appointment with the Respiratory group (aka Pulmonary Clinic). It was interesting to say the least.

His appointment was at 4pm. So I left about 3:15 and got there around 3:45. I was put into a room about 4 and waited for an entire hour before anyone even bothered to come by. Now, they didn't forget about me. The door was open and people kept walking by... good thing I had my iPod Touch with me. I watched Wild Hogs so I really wasn't very annoyed. Then one of the staff comes in and does an O2 sat test. What that means, is we checked his oxygen saturation on his current level. Then we turn it off and then we see what it needs to be at to be 100%.

Since I always like to know details... those of you who are interested in knowing the details, please continue. If the numbers make no difference to you, go a ahead a skip to the next paragraph: Noah was sent home from the hospital this past time on 1/2 a liter. After a while we went down to a 1/4. He did well on that so a few weeks ago we tried an 1/8th. But I noticed after about an hour or if he ate that he looked sick and sweaty and his color was off. So I put him back on a 4th. This past week he's been sitting around 95-97% saturation on a 1/4 at the clinic visits but when we went to the appointment today he was 100. So we turned it off. He dropped to 88. We went back on a 1/4 and he went up to about 90 and that was about it. So we turned it up to 1/2 and he went up to 98. When we turned it back down to 1/4 he started to drop again. So basically what that tells us is he needs to be on 1/4 but if he goes without for a while then he needs the 1/2 to stabilize then he can have 1/4. I mention all this detail because it's funny. This is exactly what I have been doing for him. For example: I unhook him for his bath and afterward, I put him on a 1/2 for about 1/2 an hour and then back down to 1/4. It just seems he does better this way. So to actually see the numbers prove that I've been assessing his needs correctly made me feel good. (maybe I can actually do this!!!)

Anyways, after the sat test, I was told the Dr wanted him to get an X-Ray so I needed to go down to Radiology. Now, I still haven't even seen the Dr and it's about 5:30. So I head down, get the X-Ray and go back up to our room. The place is deserted except for the cleaning crew who are going room to room. The nurse then comes in and takes a history and the Dr finally shows up. It's now 2 hours past our appointment time and I am finally meeting her. (She is wonderful by the way).

What we decided was that Noah might have a few things going on. First of all, he has 2 areas (one in each lung) that are "wet" or filled with fluid and not oxygenating his blood. One of these areas has been around a long time but isn't healing. The other is a new development. This might be caused by aspirating (or breathing in) fluid when he tries to eat. He still isn't doing so well on the oral feeds and this could totally be a possibility. I also know he really chokes when he gets meds by mouth so that could be it also. So we are going to do a swallow study and see what that shows. There is also the possibility that a nerve near his vocal cords was damaged during transplant. This can cause swelling and aspirating etc. When they took pictures of his lungs with a camera down his throat (broncing) they didn't see this area because they went down his vent tubing. So depending on what the swallow study shows we may have to do this again without a vent tube. But the overall consensus was that we will probably need to back off on the oral feeding until we can get his lungs healed.

Think of it this way... Winter Viruses can be deadly for babies with healthy lungs.... Now imagine a baby with sick lungs getting these viruses or even just getting sick... Not a good picture. So Noah does qualify for the RSV shot (which I just happened to ask for yesterday) so he will be getting that. And now there is a possibility that he will need a G tube instead of an NG tube (goes directly into his stomach instead of up his nose and down his throat) since we need to back off on the oral and because the tube can irritate his throat causing more swelling. We also just need time. Because his new heart was bigger than what a heart his size should have been, it is also putting pressure on his air way and we just have to wait for him to grow into that.

So, as of right now, it doesn't seem that he will be getting off the O2 anytime soon. But at least we will have a better plan of attack and at least have a plan before we come home so we don't have to start all over. I was also told that all the Respiratory Dr's at Primary's came from Denver Childrens so she knows them all and they are great. So that's good.

Other than that.... we are just plugging along. Waiting for October to end so we can be home. Noah really is doing good. He has his struggles still. But I couldn't be happier. I can deal with a slow recovery because at least I have my baby here to recover. I have no doubts that he will heal completely and get over all this stuff. It's just going to take some time.

But for those of you who are reading this from Utah (aka Family, Friends, etc) With Noah being immune suppressed AND having sick lungs.... our protection from germs needs to be even more diligent. While we have missed you all so very much and we absolutely can NOT wait to see you, please keep Noah's Health in mind. We respectfully ask that you post-pone your visit if you are sick, think you are getting sick, or have recently been around anyone who is sick (even if the cold seems minor). And then when you come to the house, please make sure that washing your hands is the first thing you do. Hand Sanitizer is now our best friend and a requirement to hold Noah. I hope no one is offended by these "rules" but they were given to us by his Dr's. And since even a small cold could lead to devastating events, we have to keep Noah's best interests in mind. I am sure you all understand. I plan on doing my absolute best at keeping Noah at home for the entire winter so if we aren't able to come to an event, please forgive me. He has been through so much that I just can't imagine him having to be sick or hospitalized again....

The count down to coming home begins.... 23 days to go.

Much Love,
~Crys

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.

Da Poop Stinks 2

The reduction test came back and it turns out that Noah has an intolerance to carbs. This is why he has such bad diareah and gets so upset when he eats. He doesn't feel good! The GI team said that he most likely got a virus that killed the villi in his intestines. They will eventually regrow but it can take several months. Yes, my mouth hit the floor on this one. Several more months of fussiness, not eating, upset tummy, and the worst diaper rash I have ever seen. I don't think it can be classified as a rash. It looks much more like a burn or open sore. But the only treatment is to continue to feed him through it until he gets better.

They also finally officially confirmed that yes, he does indeed have a Co-Arch. This is where the new Aorta was sewn to the old Aorta. It becomes thin and weak, so he has less blood flow to the lower half of his body and more to his head.... There is a gradient difference of about 20. If it nears 40, that's when they will have to go back in and balloon it.... I pray that doesn't happen. You should all know how I feel about the cath lab by now. There is a possibility that he will outgrow it. So... GET FAT NOAH!! That's my new moto. :)

Other than that, he's doing great. Lilly and Noah both had Feeding Therapy today. It went well. I chatted with another Heart Transplant Mother from Kansas. All I can say about that is.... Transplant is hard.

Shane comes in tonight and then we don't have another Clinic visit until Tuesday due to the Holiday. So hopefully the weekend is uneventful and fun... I'll post another update on Tuesday after his visit so you can stay updated on his progress.

Happy Labor Day! I love and miss you all.

Da Poop Stinks

Still no word on the poop samples. Most came back negative which is good. The one we are still waiting on is the reduction test. This tells us if he has a hard time tolerating carbs, or proteins, or something else. We sent the sample in but then it got lost in the computer (the order not the sample itself) so I had to deliver a new cup yesterday. We should find out more about it tomorrow at clinic.

Clinic has been tough. It's so early when you have been up all night. I set my alarm and I still end up sleeping through it and waking right when I should be leaving. I've gotten there in time but without makeup or my hair combed. Owell.... Allison doesn't seem to mind.

Everything else here in Denver is going alright. Tomorrow will be TWO weeks since Noah was released from the Hospital. I can't even begin to tell you how happy that makes me. It's SO wonderful having him here. The ONLY thing missing is Shane. But, he's coming out again tomorrow night. Which is good. I miss him SO much. This past two weeks has gone by SO slow. But he gets to stay an extra night and goes home Monday night instead of Sunday. Then my parents are coming for a visit on Thursday night. They only get to stay until Sunday morning but I couldn't be more excited to see them. I miss my family and I miss my friends. While to some degree I have become more comfortable here, it isn't the same. So, I am VERY happy they were able to work it out and come see us.

Some more great news, our cousins the Scadlocks have posted an update on Baby Beckham and he is doing wonderful. I know they would love some encouraging words over at their blog.

One last thing... I recently met a young girl name Crystal here (it gets crazier) who recently had a skin graft because she got Flesh eating bacteria from going to a water park with a sliver in her toe. She almost lost her leg but they were able to save it after cutting out the infection. I felt such a bond to her because she almost lost a limb, I almost lost my foot, we both had skin grafts, we are both blond and about the same age (she's probably about 16 or so) and to top it all off, we have the same name. and mental note to self.... check for open wounds before swimming in a public pool.... gross!

Today's Clinic Visit

Everything went well at Noah's clinic visit today. I won't know how his echo looked until they call me this afternoon with the update and med changes. So far all the stool samples have come back clean. The only ones we are still waiting on are the virus and the reducing one. The reduction test will show if he's having a hard time digesting certain things like protein or carbs or an amino acid.... that's the one I really hope is negative. I have no idea when those results will come back but today would be nice.

He's also doing much better since his bum is now numb. I can tell he's still a little upset sometimes because his tummy hurts but overall he's being a very good boy. And still cute as ever!!

A Hungry Bear

Noah decided he was hungry enough to nurse for the first time! He did so well. 10 minutes each side. That is awesome! The Lactation Specialist told me that I could try but that its a lot harder to teach them after 2 months. Well... it just goes to show. He's almost 3 months and I didn't have to teach him anything. He already knew how. And one thing of interest, Lilly never nursed that well even once. Once she knew she could get it easier from a bottle, she wouldn't even try. she was stubborn even then. :)

Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyways.
~Mary Kay Ash

P.S. Speaking of Mary Kay Ash, she is an amazing person who I completely admire. If your looking for a very good, motivating book to read, I would suggest her Auto-Biography. If you want a copy, let me know. I can get them cheap ($5 I think). Its so good I read it in 2 days.

A Sore Bum

Noah is doing so much better. After clinic yesterday I went back to the hospital to drop off more stool samples (trying to figure out the diareah thing). I ran into the Cardiologist and mentioned how he just keeps crying and crying and it's not like him. I also mentioned the labored breathing. We determined that its his bum that's hurting him so bad. It looks like 2 open wounded sores on his bum. They bleed and are so raw. He decided to call me in an Rx for a numbing cream and it has worked WONDERS! He's back to being precious and happy. Progress, Progress, Progress.....

Now Lilly is another story. She is going through some MAJOR separation anxiety. Every time I try to put her in her packnplay to sleep so starts screaming this terrified scream and holds on to me for dear life. Then if I try to have her sleep in my bed, she stays up all night trying to play, and giving me kisses, and patting my cheeks. She is such a sweetheart but we both need to sleep! I got a fold out bed and I'm going to try having her sleep on that so we can lay by her until she falls asleep. It goes against everything I worked for up toward now with her sleeping habits, but at this point I don't see much choice. I hope she overcomes this and can get back to her old self once we go home. Only time will tell.

Physical Therapy

Today Noah had his first out-patient PT appointment. He's doing great! The Therapist said he's already made a lot of progress since he was released. He will be going every week and he also starts Feeding Therapy (Occupational or OT) on Friday. And Lilly gets to go to since she has never finished her OT since I ended up getting sick (I was pregnant) and then she got sick (the nasty Roto incident) and then we came here. The Childrens Hospital was so wonderful to work with her too.

Tomorrow is our 3rd clinic visit. He will have an EKG and Echo again along with a physical eval. I think everything will be fine. Since I stopped fortifying his feed and then gave him some benadryl to rest he has been back to his old self. Mr. Happy Noah. Now the only concern will be how to get him the extra calories without the formula.... and can I continue to pump long enough (not that I don't have a TON of milk. I just have no place to store it. RMH doesn't have enough freezer space.)

So, until tomorrow.... I'll let you all know how the visit turns out.

Crazy Things

Yes... Noah was released last Thursday.

I'm so sorry it has taken me so long to post. Shane came the night he was released and stayed for the weekend, then yesterday and today have been crazy to say the least.

Noah was sent home on a list of meds LONGER than the first time. But it doesn't seem as overwhelming since I kinda know what I'm doing now. He's also on Oxygen and still has his feeding tube. He gets meds at 7am, 8am, 3pm, 4pm, 8pm, 11pm, and 12am. Several meds each time. YUCKY! But... they will be slowly weened. He has had 2 clinic visits so far that have gone MUCH better than before since he wasn't readmitted.

One down side; starting yesterday at 3pm he got EXTREMELY fussy and didn't stop crying until 6pm today when his Coordinator said I could give him some benedryl. We think it might be the formula I was using to fortify his milk for extra calories and then he got so tired he couldn't sleep. So we stopped the formula for now and he's been asleep for the past 2 1/2 hours. *sigh*

I'm going to go call my sweet husband and wish him good night so I'm going to cut this post short, but to make up for it, here are a few pictures.

I can't forget Princess Lilly. She is wearing her new princess shoes (and her jammies) that we won the night before at Bingo.

Noah was Released.... again!!!

That's right, Noah was released from the hospital last Thursday! (Sorry I haven't updated everyone yet. Shane has been here and it's very hard to have time for the computer when I would rather be spending time with him.)

I will update more details on Monday, but rest assured he is doing MUCH better than he was last time he was released. He has his clinic on Monday and we'll find out then exactly how well he's doing.... so I will let you know.

Two Extra Happy Updates:
Baby Beckham got a new heart!!! He received his transplant on Thursday and the last update said he was doing well. Check out his website for updates (the link is to the left, I'm too lazy to insert it here right now)

My wonderful friend Jen had her baby!! Everything went well and both Mom and Baby are healthy. Brennon Park Tippets was born August 14th. I'll post pictures soon.

Getting Ready to Leave

Today the Dr's told me they are getting ready to discharge Noah. As long as I am comfortable with it. I told them I was as long as he was well enough that we WOULDN'T BE COMING BACK!!!

He was a little pukey but that's probably because they are trying to quicken the pace of his feeds. He just needs to adjust. At least this time they will send me home with a pump so we can do them slow. He is still looking GREAT! He is such a ladies man. Everyone says they are his girlfriend and that he is their favorite patient. They even bring him into their nurses station and cuddle with him while they are charting. What a ladies man.

So there is a small chance he will go home Wednesday afternoon, but more likely it will be Thursday (and home means the RMH). There is still a lot to get worked out with the home hospice care and what not. But if I don't feel he's ready or I'm not comfortable with it yet, we will wait for Monday. So, I guess we'll see how I feel after his labs and chest x-ray come back tomorrow. (Wednesday as I am writing this late Tuesday night/early Wednesday morning).

I'll keep you updated. But you just have to know... He is doing SO well. He looks SO healthy and is such a good baby. It just amazes me to think how sick he was and how close we came to losing him. And now... I think we are finally moving forward to the rest of a beautiful and blessed life.

A Busy Day

Noah continues to do well today. One odd (and not so good) thing, he had ectopy again this morning. They did DC his potassium supplement last night so that might have been the reason because it cleared up by the afternoon. But still not something I wanted to ever see again.

He had his Newborn Hearing Screening done today and passed with flying colors. He also had his first PT (Physical Therapy) session. He hasn't been able to move and act like a healthy baby does so we are going to work on getting his body back into shape (baby shape that is).

They have also weened several meds and started him on a new one called Verapamil. It's a Calcium Channel Blocker. (I've taken one for Migraines for years) It should help reduce the pressure in his heart and help lower his heart rate a bit. This will help his heart fill more and be able to push out more blood. See, he has what's called a Co-Arc. Its where the new heart's Aorta was stitched to his own Aorta becomes a little narrower and tighter. Because of this, it's harder for the heart to push the blood out and the muscle in his left ventricle is becoming too thick. This new med should help fix this problem, but there is a chance they will need to take him back to the Cath Lab to balloon the Co Arc. But for now, that's NOT the plan. He's just fine. This should just help make him better.

Lilly, on the other hand, was an absolute pill today. Jen said she was fine for her but as soon as I got here it was one tantrum after another. I know she misses her Daddy.

One fun thing here at the RMH... tonight was Bingo night. A group or family comes and sponsors a few games of bingo and you can win toys for the kids. They have blankets, coloring books, stuffed animals, movies, books, toys, and tonight two big special toys for the final games of blackout. And I WON!! I won several small games and got Lilly some coloring books and a cookie monster friend, and a beanie baby. And the final blackout game I was able to get her a Workout Care Bear. It talks and moves and "exercises". She was very excited. But I think she had more fun trying to climb in the box then she did with the Bear at first.

My Cuddle Bug

Noah just loves to be held. Doesn't matter if he's awake, asleep or somewhere in between. The nurses all call him a cuddle bug.

My arms ached to hold him for SO long that I don't mind one bit. Today we did a little sleeping together and a little playing together. He even took a (very) small amount from a bottle.

Good things today though, they turned down his O2 and weened his Diuretic and blood pressure meds. These are all the things we need to do to come home. If things keep going as planned, I can see him being released maybe next Monday. (We won't be doing a Friday again... Noah obviously doesn't like weekends so we'll let him spend that one in the Hospital). Now this is all my opinion, the Dr's haven't said anything about release yet. So, we'll see. He's just so stinking cute!!!!

2 Months Old

HAPPY BIRTHDAY NOAH!!

Today you are two months old. They have been rough months for you but you have been so strong. You are my hero. You are capable of anything and I know Heavenly Father has wonderful things in store for you. Keep fighting my little man. We have a life time of memories to make together.

I love you more than words can say....

Love Mommy

xoxo

Making Progress

Noah is looking so much better. I am really happy with his progress. He continued to have a harder time breathing today but it wasn't any worse than yesterday. They decided to switch him to bolus feeds instead of continuous (giving it in bulk as if he had eaten it on his own) so that there would be more time without anything in his tummy to see if that will help ease the pressure on his lungs. I even tried to give him a bottle again today. He did a very small amount but I am happy with anything at this point. We start the feeding therapy again tomorrow.

I went there this morning to see him and he was asleep the whole time. I didn't want to disturb him so I just sat and watched him sleep. Then this afternoon when I went back he was awake. So I played with him for almost 3 hours. I talked to him and sang to him and gave him tons of kisses. He smiled and sucked his paci. It was so nice. He hasn't started cooing yet but hopefully that comes soon. I did have to change his bum several times. Every time it was clean he'd wait 3 minutes and poop again.... definitely a Martin.

Here is my little warrior today while we played...

A Few Things...

First of all, Noah is doing well. They pulled his feeding tube back into his stomach and he has tolerated it fairly well. He was having a harder time breathing today (as the stomach swells there is less room for his sick lungs to expand) but the Chest X-Ray looked OK. So they are just going to keep a close eye on it. He currently has NO IV's and has the chubbiest cheeks I've seen since Lilly was little. SO stinking cute. He is a cuddle bug, which I love. When the nurses aren't busy, they hold him a lot. Last night his nurse cuddled (and unofficially napped) with him for almost 2 hours. I'm so glad they are taking good care of my baby. I wish I could be there more but I know Lilly needs me too.

Second, I recently found out that the son of my Dad's cousin recently had a baby with similar heart defects as Noah. Little Beckham is currently on the National Transplant List in Iowa. Please keep him and his family in your prayers. Your prayers and love have been such a comfort to me and I know they have helped Noah continue to get better. Little Beckham could use some extra prayers right now too. You can check up on his progress at his family's website: Our Baby Beckham.

Third, I have a new friend here in the internet world. She has become my very own personal Angel. Her name is Jenny and she is so loving and compasionate to the families of sick kids. She has been a huge supporter of Noah and has posted his story on her GusGang blog to ask for prayers on his behalf. I could not be more grateful. Her pesonal blog is also a wonderful read and keeps me entertained on a daily basis. You can check it out at JennyUpTheHill.

Noah's Looking Much Better

Little Noah is doing much better. I have a good feeling that he's finally on the up and up.

Noah's Moving

Noah did so well today!

Still no ectopy, blood pressure was stable and in the normal range, he wasn't breathing too hard, and he was still tolerating his feeds (even though they are still going past his tummy). He was really fussy this morning but calmed right down when I held him. Then, once they took out his ART line in his groin, he was an angel and slept the rest of the day.

He is being moved OUT of the ICU as I write this. (I haven't gotten an update from the nurse yet, but I was told he was being transferred during shift change). I just hope and pray we won't have to go back. I love the nurses in the ICU but I really don't ever want to have to be there again. But he really is doing good and I feel good about it.

The next focus points for him to master before he can be released to RMH is: He has to tolerate Bolus feeds into his tummy (all the food at once just like eating himself instead of a continuous drip) without lung/breathing complications and he has to be weened down on the oxygen. But these are all things that can be done....

I may just have my baby home for good within the next few weeks! (or much shorter if I'm lucky but I am NOT going to let them rush it this time. I won't be able to handle THAT emotional roller coaster again!)

One Month

Today is One Month since Noah received his new heart. I wanted to take a moment and remember the family who so graciously turned their tragedy into my miracle by making such an important decision to donate during their pain. I'm know they are still suffering and my heart aches for them. I just hope they know the amazing gift they have given me and how grateful I am.

Here is what their gift has given me:

And a lifetime of memories to come....

Are We Leaving the ICU??

Noah was doing much better today. He looked good and his pressures were good. He wasn't having such a hard time breathing and he hasn't had any ectopy (weird heart rhythms) in a few days. His lungs are still damaged but they are getting better. Since they were so damaged with having a bad heart for so long which caused the Pulmonary Hypertension and Edema and then they were even more damaged after the transfusion reaction, the Dr said it will be a long time before they ever look normal, if they ever do. She doesn't know what if any long term damage will be there but she doesn't suspect it will be too bad. But it is reasonable to say he will always have weaker lungs than a normal person his age.

They have weened him off one of the blood pressure medicines so they kept his ART line in to continue monitoring his blood pressure more accurately than a cuff but since it was been good today, they will remove it tomorrow. They also said it's very likely he will be moved upstairs to the regular inpatient rooms and out of the ICU tomorrow. It's good to know he's getting better enough to be out of the ICU, upsetting because I know he won't have such one on one care that he gets in the ICU, and scary because I don't know if I dare believe this will be the last time we are in the ICU. I just don't want the Dr's to rush his recovery. I know he will recover, but Noah has already proven to be stubborn and difficult just like me. He will get better on his own terms and his own time frame. If they rush him too fast, he might backslide again. So I just hope this time its for good. His NG tube is still past his stomach and going into his intestines, so one thing we will have to work on for sure is his feedings. I just hope we can get that under control before they say we need to switch to a G tube (where it goes right into his stomach isn't of up his nose and down his throat). Like the poor kid doesn't have enough scars already! They have such a hard time getting veins for PICCs and IV's that he is poked all over his body with bruises and marks and they still come up empty handed. Not to mention his transplant scars, the drainage tube scars and his pig tail scar (the chest tube for his collapsed lung). But one good thing about him having them now, he will learn about them just like any little kid learns where their belly button is.

Still No Answers

The past few days have been a struggle to keep Noah's blood pressure down and help ease his breathing. We still have no idea what's causing all these problems.

Noah had his chest tube in for a few days and when they thought his lung was healed they removed it. But then the hole tore open again and they had to put the chest tube back in. He needed another IV to give him all his medicine so they tried for a PICC line. And when I say tried I mean they tried and tried and tried and tried. But it just didn't work. So, they are trying to switch all his meds to oral.

Last night they had to stop feeding him because his belling was starting to swell again and he was having a VERY hard time breathing. They are doing several lung treatments to try and help them heal and today they put his feeding tube further down past his stomach into his intestines so they can feed him without filling up his belly. This should also help ease his breathing.

Still no answers on the cause for the high blood pressure or his other symptoms. I just pray they will slowly get better and he can be released for good this time.

As I write this it is now August 7th. Exactly one month since Noah got his heart. He's getting bigger and becoming more aware. He LOVES to be held and gets very bored when nobody pays attention to him. (As if he doesn't have all the attention in the world, the nurses just adore him).

I am so thankful for the support you have all given me. Your love and prayers are what keep me strong. I thank my Heavenly Father for each of you every day.

Healed in Heaven

In Loving Memory
Onyx Isabella Sanchez-Lopez 07/02/07 - 08/05/07

Onyx was a beautiful little girl. She had more black, thick hair than I have ever seen on such a little girl. She was born with Hypoplastic Left Heart Sydrome. Heavenly Father sent her to earth with only half a heart because he wanted to keep the other half with him. Onyx passed away Sunday morning. My heart breaks for her mom, Sharon, who I met here at the RMH and in the CICU. I pray the Lord will bless their family with peace and comfort and help them through their time of tragedy.

Sleeping with Mommy

Noah is doing better with some things, not with others. Its hard to update when Shane is here but since he leaves tonight I will update soon.

Quality Time with Dad

Lilly decorates Daddy with stickers from her new sticker book.

Noah's Current Condition

This past week has been rough. To be back in the ICU, with chest tubes, and a ventilator, and a PICC line, and to top it all off, be in the SAME bed we started our Denver journey in... well lets just say uugghhh! Are we starting this again? Although, it's been harder this time. Before we knew what was wrong. We knew what he needed to get better. And we didn't have to wait very long for it. What has made this so hard is the unknown...
Here is what has happened:
Noah had a bad transfusion reaction to the blood he received on Saturday. By early Sunday morning, he was back in the ICU, sedated, and on a ventilator. And, he's swollen head to toe, can't open his eyes because of the hives on his eye lids, and he's cherry red.
He was started on Steroids to treat this reaction but since we had been questioning rejection, they gave him very high doses of steroids known as Rejection treatment... He didn't get better.
He continued to have weird heart ectopy (missed beats, pauses, bigemini, PVCs, PACs, and bradicardia). We also couldn't get an accurate blood pressure. For some reason we couldn't get it to read. His heart rate was very low though. SO... Dr. Pietra finally decided we needed to do a cath. Noah should have been better and since he wasn't and not even headed in that direction, we needed to know more.

He went into the Cath lab about 6:15 last night. Once they got access and were working the cath up to his heart, Allison called to give me an update. Turns out, Noah's blood pressure was DANGEROUSLY high! In the 180's. Since he's an infant, that's the equivalent of an adult being in the 300's. (I can picture the Dr's reactions when they saw that... "HOLY CRAP!!") They finished the cath procedure, which included testing function, checking pressures, and taking 5 biopsies of his heart and he went straight down for a CT scan. The only thing they could think of that would cause pressure that high in addition to why his red blood cell levels keep dropping was a brain bleed. And from the way they were talking, they totally expected to find something completely devastating if not fatal.

We walked down to imaging and I felt like I had a beast locked in a cage inside my chest. It was screaming and clawing to get out but I was able to keep it locked up and stay composed. It didn't take long and Allison came out to tell me everything was fine. They didn't find anything even slightly abnormal. No bleed and no damage. I could not have been more relieved. They also scanned his lungs and they looked fine too (still wet and sick but nothing horrible) except the upper right corner of his right lung was bad. What they figured was very resistant pneumonia. So he starts several new antibiotics to treat the pneumonia. He was started on several drugs to try and bring down his blood pressure. He had a renal ultrasound to make sure it wasn't kidney related and everything looked great. The heart biopsies came back 100% negative. NO REJECTION! The steroids got rid of it all and his heart looks great! In fact, since it can pump so much pressure, it's a very good strong heart!

Now we just need to figure out what is causing the high blood pressure. The first thing the Dr. mentioned that it could be was............... Pheocromacytoma! I nearly fell out of my chair! It's a very rare Adrenal gland tumor. When I was having episodes several years ago and I was very sick, the Dr's thought I had Pheo. But luckily my symptoms went away and I was told it was possible the tumor went dormant and when it flared back up again we would start treatment then. So to hear that Noah might have Pheo nearly knocked the breath right out of me. Could this seriously be possible? My little boy, not even in this world for 2 months and he already had some of the most rare conditions you could possibly have. (TRALI, Pheo...You know they are rare when 98% of the Dr.s have no idea what it is or have even heard of it.)

So, we are running some tests to see if that's what it is. They are also still running the tests for TRALI. The other test they ran this morning was to see if he is making his own blood cells and he is. So there is still no explanation for his crit level to keep dropping. But we are going to do Direct Donor blood this time. Shane comes in to town tonight and first thing tomorrow he's going to the blood blank. I am not risking THAT again. *stupid blood transfusion reaction....*

Hopefully things will start to look up. Even if we never know whats going on and causing the problems, as long as they STOP and he gets better, I will be completely fine with that!

After His Bath

But before his Cath Proceedure... Yep, that's right. He's going back to the Cath Lab to try and get some answers about this confusing situation. This is a very big deal since they HATE to do caths so soon after transplant. And last time he got so sick!

A New Chest Tube

I got another dreaded phone call from the ICU this morning.
Noah's lung developed a hole and the air was leaking into his chest cavity. Since the air has no place to go it can be deadly as it crushes the lung and then the heart.
The surgeon came in and put a chest tube under his arm inbetween his ribs to release the air. This helped his lung expand again. They believe it did this cause his lungs are sick and stiff. And when they are stiff they don't expand and contract as well and it just popped a hole.
They said he shouldn't have any problems long term related to this hole but we don't know what sort of problem he will have because of his TRALI. There is a TRALI expert here in Denver who will be coming to see Noah today and should be able to give me some more insight.