Baby eyes

Aiden had his eye appointment on Tuesday they wanted to check his lazy eye. His vision is great but it is still there. One of his eyes tends to wander a little but he does pull it back in. We go back in 5 months because they want to keep an eye on it. Nothing needs to be done now, but in the future if it does improve it may need to be dealt with. Not going to worry now, it minor compared to what he has already gone through

Zzzzzzzs

Little heroes

Connor's cape came in :).

My cat is such a little ham ;).

The little things

Its been rough in the heart world to many little ones loosing there battles has put me into  a bad mood. Other stuff has not helped either.  Today I got another  reminder on  how big the heart world really is.  I was talking  to a guy who was borrowing some bench space. I mentioned Aiden and his heart defects. Well his daughter had the SAME defects! And she was currently working on getting in to  school! Small world huh?

Aiden really helped make my day better. After work I went to pick up my boys from my mom's house as I came into the house  Aiden was standing and holding onto the couch. I didn't go and pick him up because he loves to stand right now. He saw me got down crawled over to me sat down n front of me and lifted both hands.His little hands moving like crazy. They always do when he gets excited. I picked him up  he  started laughing he as so excited that he had come over to me. First time he has done that it was so very cute!

Lastly still no cardio appointment! Getting frustrated with it!

Wordless Wednesday

Ignorance IS bliss

I finally understand the phrase yes ignorance is bliss. Living with the knowledge of CHDs feels changing.The world is so much harder and darker than I ever imagined. Before this world I did not realize how many children are affected by heart defects hoe many children die. This week alone we lost little Kylie and three little babies to t defects. Three, Kylie included were waiting for heart transplants. This world sucks! These children's lives were cut way to short and it just breaks my heart.

There are many things that I look at differently like a balloon flying in the sky. My dad always said looks like someone lost there balloon. Now I see it as a symbol, a symbol of a person honoring and mourning the loss of a child.

Heart hero cape

Got this from www.heartherocapes.com its so cute! Planning on getting one for Connor. Aiden's was donated to him because he is a heart kiddo. Anyways enjoy the cuteness. Once I get Connor's I will be taking more photos!

11 months

Stats: As of Monday Aiden weighs 15 pounds 12 ounces and is 27 inches long.

Diapers: Size 2

Clothes: He us staring to fit in 6-9 month clothes.

Eating: He is eating more solid foods and some of his bottles include Pediasure. After he turns one he will be drinking more Pediasure and getting him used to it now.

Sleeping: Same as always great sleeper!

Milestones: He loves to pull himself up to standing and babbles a lot

Medical: Still trying to get a cardio appointment set up and that's about it.

Sad

Another heart warrior  her battle. She was in the hospital for over 7months. Connor and her were only a day a part in age. This heart world sucks. I hope her family can find some peace in this hard time. Fly high little one. Link yo her page can be found below.

http://m.facebook.com/KyliesLubADub?ref=bookmark&refid=17

Feeding Tube Awareness

Today is the start of feeding tube awareness  and I wanted to post about my families small experience with feeding tubes. Aiden was on a feeding tube for only a few months those months gave me a glimpse into the world of being a mom to a tubbie. Now I maybe biased but the feeding tube he was on had to have been one of the harder ones to deal with. He had an NJ tube ( http://www.chop.edu/service/radiology/interventional-radiology/nasojejunal-nj-tube.html ). This feeding tube us bot meant for long term use and skips the stomach and jejunum(small bowel).Aiden had this type of feeding tube  because he silently aspirated. Due to his heart surgery it caused the nerve that helps swallowing become numb. I remembering when I watched him have a swallow test. The swallow test uses barium and x-rays. Basically it can show where liquid goes after you swallow. Some of the liquid that drank went down his windpipe. The scary part was he did not react when it happened. No coughing no nothing! Now that was bad if I had feed him via a bottle at that time he could have drowned. 

As a parent that was a very scary thought. Eating could have killed him hence the NJ tube. He got that tube due to his aspirating. They did not want it in his stomach because he could spit it up and aspirate on it. The NJ tube was important but stressful! It clogged a lot and each time it did I had to take him up to PCMC an x-ray was required to place it. It never clogged during normal hospital hours so the trip ended up in the ER. Each time a different person would ask questions on why  was on it. The questioning got old fast. Some would claim it shouldn't be clogging this often. Cannot say how happy I was when that tube was gone. The Doctors who did not know what Aiden had gone through acted like I was doing something wrong.

Feeding tube awareness is important. I know many people look at those who have feeding tubes as though there is something wrong with them, terribly wrong. My Grandpa had a feeding tube after a life saving surgery for pancreatic cancer. He had a whipple procedure and needed time for his digestive system to heal.

Though I hated the time Aiden was on his I know the tube saved his life and I am thankful for that but I do not miss it. It helped us along our heart journey. If you would like to read more about feeding tubes click on the following links.

http://agirlandhertube.blogspot.com/

http://averyspecialcase.blogspot.com/

http://m.facebook.com/home.php?sk=fl_10151210366594438&ref=bookmark&refid=60#!/HelpIsabelleGrow?ref=bookmark&__user=806434437

http://m.facebook.com/home.php?sk=fl_10151210366594438&ref=bookmark&refid=60#!/AnthonysPromise?ref=bookmark&__user=806434437

His Beautiful Heart

I have been in  this year in what to post for CHD awareness week. I finally decided to post ultrasound pictures taken at Aiden's 20 week ultrasound. I remember looking at the pictures of his heart and thinking how beautiful it was. I had no idea that there was a problem with it. Now all I can tell is that one side is smaller than the other. Nit much to go by. I am so thankful for he ultrasound tech. She saw something wrong and  with her gut instincts and had me come back and the took a second look and wanted me to go to Primary and have his heart checked by experts.

Even after everything this pictures are still precious and beautiful to me even knowing it is not perfect.

Proud momma

Just wanted to share how Aiden is he is crawling better now. I know if he wanted to crawl far he could if he wanted to. He always seems happy were he is at. He is also now pulling himself up to were he is standing!