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!

http://www.childrensheartfoundation.org/donate-now

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

Jason is gaming for charity!!!

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

https://www.hospitalshelpingkids.org/ExtraLife/m.aspx?i=20859738F9BE678C5

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!!!

Laura

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!!

Laura

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!!!

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!

Laura

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!!

Laura

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.

Laura

Nathan is back in the Hospital

Well Nathan was admitted to the hospital Friday night. He has an infection on his incision:-( Poor thing!!! It is pretty nasty. He is on IV antibiotics. We will be here for awhile. The surgeons want to make sure they get all the infection because they do not want it to reach his heart. Also - we are making sure the IV antibiotics work because if they dont (or dont work completly) they will need to reopen the site and clean it out. :( Something we DO NOT want.

Nathan is doing good. He is playing and LOVES riding around the hospital in the wagon. So we do that A LOT!!

Please be thinking of him. I know this will be behind us soon. He has been through so much and this just sucks that he has to be readmitted.

Hope everyone is doing well!!

Laura

Nathan's Pediatrician Visit

Just got back from taking Nathan to the doctor. He said Nathan looks great! He is eating and playing like he should! However right before we left the house for the appointment Nathan starts coughing and vomits EVERYWHERE! BLAH! It was nasty. But it is just from all the congestion. Hopefully that will clear up soon.

I really like his new doctor. He was very nice. I have known for awhile that Nathan is behind on his speech and this doctor wrote us a referrel to a speech therapist. I will let everyone know how that goes. Hopefully Nathan will be talking up a storm in no time!!

Nathan has a cardiologist appt on Monday!!!

Hope everyone is doing well!

Laura

Hard Nights

Nathan isnt sleeping well since being home. He tosses and turns. Wakes up at least 7 times a night:-( He cant breathe out of his nose so I know that is causing some of it. But it also seems he still might be in some pain. So we continue to give him motrin and tylenol. He is also still coughing a lot. Tomorrow we have an appointment with a pediatrician so Im curious to hear what they say about it.

Today Jason went back to work. I am going to miss all his help!!! But it will be nice to get back to normal.

Ill let everyone know how the appointment goes!

Laura

Wow - Its starting to feel normal

Today we took the boys to see a movie. Only a week ago Nathan was in ICU. Cant believe it! We still have to pace him (he thinks he is 100%) But today we decided to go somewhere low key. He did great!

His nurse came today and she said he is getting better and better everyday. He is still very congested so we are trying to do chest PT to help break that up.

I can not believe all this went by so fast. We have been getting ready for this surgery for months!! I know he has a lot of healing to do but Im so glad he has done so well. With the big move here and getting ready for this it has been very stressful. Now the move is over and the surgery.....seriously what am I going to focus on now!?

First Day Home

Nathan is enjoying being home. He is in alittle pain but hopefully we can get that under control. He has been very moody:-(

Last night he slept SO well in his bed:-) And so did I! It was so nice.

In the hospital after he woke up in the morning and after his nap we always took him on a stroller ride around the hospital. Well we have a stroller at home by the front door and sure enough he wants to be pushed around the house when he wakes up:-)

The in home nurse came this afternoon. She was a big help. Nathan has been throwing up his medicines so she gave us a few ideas. Checked his oxygen level and his scar. All the regular stuff. He looks good. He will have another in home visit on Friday.

Other than that not too much to report. My mom left this morning:-( She was a HUGE help!!!!! I miss her. Jason's parents leave tomorrow:-( It was so nice having all the help. His parents were amazing! Couldnt have gotten through all this without them.

WHAT??? ARE THEY REALLY GOING TO LET US GO????

Dr. Breitbart just came in and said goodbye!!! :-) Nathan is well enough to go home!!! WHOO HOOO we made it!!!!!! Cant believe this is behind us. Im am so so so so so excited!!!!

We should leave in about 3 hours. We actually had a roommate last night so it was kinda hard. Poor little boy did NOT want to be here. Nathan kept saying "Baby BIG boo boo!!" It was sweet. But we were up almost all night.

Nathan still has a few issues but nothing we cant monitor from home. We will have a nurse come to the house to check on him too.

Oh also my wonderful brother got a maid to come to the house and she is cleaning right now:-) Thank you Mike!!!!!

Here are some pics of Nathan. The best one is of him and his WONDERFUL doctor!! We are so blessed to have such a great doctor!! He is AMAZING:-)

Pics of Sunday

A few pictures of Nathan! He was playing all day!! Also he decided to take a nap during his ekg:-)

Monday

Yesterday Nathan forgot he just had heart surgery. He was walking, crawling, bending, talking, laughing and even road around on a tricycle. Seriously how can he do this?? He is on the road to a full recovery for sure.

He is still in junctional though. And has 1st degree heart block. So we will be here for awhile. The pacing wires are still in. He has an echo today along with a chest x-ray.

Overnight we had a junpy nurse. She was sweet but when Nathan turned over he would losen his finger probe and his oxygen sats would go down. Instead of repositining him she wanted to put him back on oxygen. Well I wanted to make sure he was indeed dropping, which he wasnt...it was the positon of the finger probe. So it was a bit of a fight to keep that oxygen off! Which he hates and I really wanted him to have a good nights rest.

Today the playroom is open! He will LOVE that!

I will post pics of yesterday as soon as Jason gets here.

More to come!

Laura

Sunday Update

Nathan continues to improve everyday. Last night we had NO issues. He kept his heart rate up and oxygen level at around 83. It was easier to get in bed with him because he had a lot of wires out yesterday. I PRAYING they say we can take the pacing wires out today. But we will see....please please please!!!!!! He did wake up really early (5:15am) But he has done that to me at home so I guess he is just ready to start the day!

Yesterday he walked! I thought it would take him awhile to get up....not this boy! He was READY!! The nurses opened the playroom (usually closed on weekends) for him. He play for 40 mins! Then I had to take him back....he needs to pace himself! Im attaching pics.

Other then that not much to report. He is eating AMAZINGLY! He even had a salad for dinner. The nurses were impressed in seeing a 2 year old eating salad:-)

More updates soon.

Saturday Update

Nathan is still doing great! He is resting now. We had a few issues overnight. His heart rate would drop very low and the surgeon was called. But the surgeon said that as long as all his other stats were ok then he was ok with him being low. So it wasnt too bad. He is also having some issues keeping his oxygen sats up while sleeping. So we need to figure out why.

This morning we went to get a chest x-ray which came back ok. He got to take his last IV out!!!! The IV was in his foot so he hasnt walked yet. But after naps we should do that. He is eating well and playing. He is still in junctional but the doctors again said that he is doing fine with it. He also has 1st degree heart block. But again, his blood pressure and everything else are normal meaning he is handling it well.

My step-father Larry made us some relaxing CD's so we have been playing those. And boy are they RELAXING!! I think Im more relaxed now than I have been in DAYS! Ummm.....maybe that is why Nathan's heart rate goes so low:-) He is just so relaxed listening to the CD's and cuddling with me:-) Which he is loving getting out of bed and sitting with me in the chair. He lets me do his chest PT and just drapes himself over me and gives big hugs! It is adorable. The PT will help move some of the fluid around his lungs. Just patting on the back and stuff like that.

Joshua came to visit (will have pics up soon) They LOVED seeing each other!! It was very special. Gave each other hugs and kisses, it was great.

My mom and I are here today and Jason is with his parents and Joshua. Mom and I are going to work hard to get Nathan up and moving!

That is all for this afternoon! Hope everyone is doing well and THANK YOU EVERYONE for all the prayers and words of encouragement!

Update with Pics!

We are on the floor now. Nathan is playing with toys and talking:-) Even got his first wagon ride. He is doing great! Here are some pictures!!

We have a room!

Just got a room :-) Not much to report. Nathan is resting and watching cartoons. Jason will go home tonight and bring Joshua here tomorrow to SEE HIS BROTHER! Cant wait for that:-) I think that will do Nathan a lot of good.

In about an hour we will attempt walking!

Thank you everyone for all the sweet words of encouragement. Jason and I really do need them. We are very upbeat about Nathan's recovery. He is doing so well. Even with the small roadbumps, we know he will pull through. We are thinking we will be here until the end of next week.

Well Nathan just told us he wants to walk.....more updates soon!

Laura

Spoke too soon

Well darn, I spoke too soon about the temp pace maker coming out. It seems he is back in junctional but handling it well (meaning his blood pressure and heart rate are ok) but they still need to monitor him. So the pace maker is only going to be used as a backup but they want it to stay in.

The chest tubes will come out though! This may also help his oxygen levels. Right now he is hanging around 82 and he really needs to be in the 90's. This will also make him more comfortable and be able to......walk! Wish me luck in convincing him to do that!

His blood pressure is really high right now. They are going to increase one of his medications to see if that does the trick. Also he could be in a little pain making it go up so he got some medicine for that a few minutes ago and then he ate pancakes:-)

He is still going to a room though so we are leaving ICU!!! Kinda looking forward to that. As much as I like the nurses and the one on one here I think it will be nice for Nathan to have a playroom and be able to start opening all those great toys people have sent his way!!!
More to come today I am sure! Plus Ill have a shower....and that will make everyone happier!

Update more soon!