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.
Saturday, October 27, 2007
Wednesday, October 24, 2007
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!!
With Much Love, Crystal at 8:32 PM
Wednesday, October 17, 2007
With Much Love, Crystal at 6:44 PM
Sunday, October 14, 2007
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.
With Much Love, Crystal at 10:54 PM
Saturday, October 13, 2007
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.
With Much Love, Crystal at 10:30 PM
Wednesday, October 10, 2007
Monday, October 8, 2007
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.
P.S. Please check out my Memoirs of a Mommy on a RMH update.
With Much Love, Crystal at 2:44 PM
Sunday, October 7, 2007
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.
With Much Love, Crystal at 1:21 AM
Friday, October 5, 2007
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.
With Much Love, Crystal at 10:58 AM
Tuesday, October 2, 2007
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.
With Much Love, Crystal at 10:20 PM