Tuesday, February 1, 2011

Hello Everyone!!

Febuary is CHD Awarness Month with the 7th - 14th being National CHD Awarness week! I thought a video of Nathan's journey so far would be a great way to spread awareness. It is a small glimpse into what he has been through in his life so far.
There is one thing that I wanted to point out before you watch the video. As I was looking for pictures to include in the video and remembering each day, I noticed that through all this Nathan has never changed. He was born a very calm and accepting baby. Allowed all the doctors and nurses to do what they needed to in order to help him. He would cry when he got poked by a needle, but only for a short time. As he got older he hardly flinched. He knows what needs to be done even more than I do sometimes. After each hospital stay this past couple of years the first thing he would do when he got outside was find a flower to smell. Why? I honestly dont know. I thought it was because he just liked to smell flowers. But he doesnt go off to smell the flowers everyday. Just when he has went through something big. It is his way of rejoicing. His way of knowing he made it. And he has made it! He is happy. He is stable. He will have an amazing life because he is choosing to smell the flowers.

I continue to watch him grow and try to teach him about his condition. But the only thing that will give him a chance to live a long life is research. I am including a few facts about Congenital Heart Defects along with a link to the Childrens Heart Foundation. Please take a moment to watch Nathans video and if you could donate to help save the lives of these children who need so much!


Congenital Heart Defects are the #1 birth defect

Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation

This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects

Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.

It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications

Friday, October 8, 2010

Jason is gaming for charity!!!

Yes, for 24 hours straight Jason will be playing games for Boston Childrens Hospital!! Here is the information page.


He is very excited about this. Not only will he benefit the hospital that will be a part of our lives for many many years, he will also get to play games for 24 hours straight (and I cant complain about it!) Win win I tell you!!!!

My role will be to keep the kids occupied and of course bring him all the caffeinated beverages he needs. Cant he do it!!!?? He has had a lot of practice for sure!

Thank you all for supporting him. It really means a lot to us. We not only want to raise awareness for Congenital Heart Disease but we also want to support one of the best hospitals in the country. The children who go into Boston Childrens Hospital need our help. Lets be there for them and show as much support as we can!!!!!

Hope everyone is doing well!!!


Monday, September 20, 2010

Cleared for SIX MONTHS!

Nathan had his cardiologist appointment today. Dr. Breitbart said he looks great and he doesnt need to come back for 6 months! :-) So happy!!!!

Hope Everyone is doing well!!


Thursday, September 9, 2010

Magic Cream Worked!

Hello Everyone

Well, Im happy to say that Nathan's incision is healing very nicely!!! Sorry I havent updated sooner. I guess things have gone so well I havent thought about blogging:-) He is still not sleeping 100% and he isnt eating. All of this is to be expected. Hopefully he will start improving in those areas soon. But no rush! We are just thrilled his incision is looking so much better. We are still keeping it covered...just until it heals all the way....Im not taking any chances.

It is cooling down here in New England. Jason and I are loving it here. We have taken the boys to several places. They are enjoying it and Im going to get them involved in a playgroup starting next week. We miss everyone though:-( But we are having lots of visitors so that helps.

Hope everyone is doing well!!!

Friday, August 27, 2010

Another Doctors visit...

Last night Jason and I noticed that once again Nathans incision was getting red and more swollen. It was late and Nathan didnt have a fever so we decided not to take him in to the hospital. Instead we waited until this morning and went to see his regular pediatrician. Honestly I dont know what is going on with it. It isnt a full on infection. But it isnt healing properly. It is extremely red and puffy and oozing. It is only about an inch. The rest of the incision is completely healed.

So the doctor said that he was "alittle" concerned. But he is willing to try a topical cream. Im happy about this. I am praying that the cream does the trick . I will admit that I really dont want to go back to the hospital. But of course we will if Nathan needs it. Jason and I are really tired. We would like this rollercoaster to stop. We were talking this afternoon and both of us just cant believe how some parents cope with an even sicker child. I cant even think straight these days and had to be convinced that it was 2010 by the lady at the doctors office. My brain just isnt working!!

I am sure Jason and I have learned a lot from this experience. I like to go back and remember things that I have been through and tell myself what I have learned. With this experience I know there is something but I think I wont know exactly until things start to calm down:-) God really doesnt give you more than you can handle. Just when Im about to break I feel him give me that extra push I need.

Im sure this incision thing will eventually work itself out. I just wish we knew what was causing it. Ill let everyone know how it goes with the cream!!!

Please keep praying that it works!


Wednesday, August 25, 2010

Update on Nathan

Hello Everyone!

Just wanted to give everyone an update on how Nathan is....

He is doing really well. Since being discharged from the hospital for his infection he has been healing nicely! He is playing and for the most part he has been in a good mood. He hasnt been eating very much and sleeping has been an issue. I started giving him motrin at night and that seems to help. Sometimes he will grab his chest (where the incision is) and say ouch. So Im thinking he is still sore.

We have been staying close to home these days. I still feel that he needs to recover. It has been almost a month since the surgery, but looking at Nathan you could never tell. So I think it is up to Jason and I to pace him. He thinks he is 100%! :-) The best thing is he is PINK! He has pink lips and pink hands and feet. Im thinking his oxygen level is around 93%:-) So nice to see him that way.

We took a small day trip to Maine last weekend. The boys had a great time! We are looking forward to the Fall. Thinking of taking a trip to Connecticut to see the leaves change! I bet it will be beautiful.

I will keep everyone updated. But Jason and I are looking forward to a very very boring year.:-)

Love Everyone!!


Tuesday, August 17, 2010

We are HOME!

They discharged us yesterday evening. It is SO GOOD to be home!!!!! Hopefully we wont have to go back for a very long time!

Nathans incision is healing. They gave him some oral antibiotics to go home with. So hopefully that will clear it up completely. We will be staying close to home all week just relaxing! That is if Joshua and Nathan dont go stir crazy. :-)

Today is Jason's birthday!! Im sure he is happy to have everyone home. We dont have any plans really. I think we may just celebrate this weekend.

That is all for now!! OH WAIT NO I HAVE MORE.....

The best news ever is Nathan is in NORMAL SINUS RHYTHM!!! No more heart block and completely in sinus rhythm:-) So happy about that. We found that out Sunday but didnt want to say anything until his own cardiologist told me. HOORAY!

Hope everyone is doing well! Thank you again for all the good thoughts and prayers. They are helping more than I can tell you. Knowing that Nathan has all these people behind him is so wonderful. Im sure he will enjoy reading this blog when he gets older and he will be so proud of himself for all that he has gone through.