Our Lil' Hero: Time is Flying!

Tuesday, March 8, 2011

Time is Flying!

Well obviously we have been home for a bit and I haven't posted anything! So where to start?! I guess we will start from when we got home, he is LOVING being home and we LOVE having him home! He came home still on oxygen and with his PICC line, UGH that PICC line might just be the death of me! He has had it for almost a month and still nothing is figured out with it. Home Health is coming almost daily drawing labs to see the antibiotic level in his blood and it is always too low so he is at 190 mg of Vancomycin. It makes me kinda nervous because a side affect of Vancomycin is hearing loss and he is on a lot for a little guy, so needless to say he is going to have a hearing test done on Monday. Also the dang thing has clotted twice! So I cannot wait for that to come out, It gets to come out on the 24th, WAHOO!! He also has had a post op appointment and they did a trial to see if he could go off his oxygen and he failed :( But they will try again on the 24th and fingers crossed we will come home without a PICC line and Oxygen! Up to 3 Ealry Intervention has come in to evaluate him and he is at 5 months on most of his skills and development except his gross motor skills. He is only at the same level as a 2 month old in that section. He is barley starting to lift his head off the ground while on his tummy and he doesn't put any weight on his feet so that puts him behind. But they will have one of their PT's come out and work with him to get him back on track. I cannot belive he is already 5 months old!

Things Mason loves/does:

He weighs 11lb 2oz (still not on the charts but growing!)

He is 23 1/2 inches long (1% yay)

He LOVES his mom! ♥

He thinks his brother is the funniest person ever!

He likes to eat his toes

He is curious about new people

He likes to watch the dog

He LOVES toys!

He smiles at anything, even when he is crying

He brings so much love into our home!

We love you Mason boo!

I had to take advantage of him pulling his oxygen stickers off of his face and get a picture of him oxygenless! :)

He is so happy most of the time!

His smile is contagious!

3 comments:

Unknown said...: He is such a cute little boy! I do love seeing his precious smile. Love him.; March 8, 2011 at 1:34 PM
Rowland Blog said...: Miss you so much! Hope I get to meet that precious little boy this summer! And yes that smile is SO SO contagious!!!!; March 8, 2011 at 2:45 PM
brandib said...: I am in love. He is such a doll. I love that smile. How can you not smile at that. GLad to hear he is doing good. When ever you are ready, let me know and I will have some stuff for you to do.; March 8, 2011 at 4:52 PM

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A little about Mason

This is a journey through Hypoplasic Left Heart Syndrome (HLHS). Mason was born on October 1, 2010 as what we thought was a healthy normal baby boy. At 3 weeks old we found out when he was life flighted to Primary Children's Medical Center that he was born with an Unbalanced AV Canal Defect that caused him to have Hypoplastic Left Heart Syndrome. He also was diagnosed with 2 Large ASD's a VSD, a CoArch of the Aorta, and a small leaky Mitral Valve. He had his first open heart surgery, the Norwood, in the end of October 2010. After surgery his chest was left open and they surgically closed it a few days later after the swelling went down. He had his second open heart surgery, the Glenn, in January 2011. He did great with recovery and got discharged 1 week later. We had him home for 1 day then he was rushed back to the hospital where they found he had a sternal infection and had to open him back up and wash out all the infection and he had a picc line placed for 6 weeks for antibiotics. He had a couple of heart caths during that time, and echo every 3-6 months, and eye surgery.
In February 2013 we sent his records to Boston to explore different surgical options for him. We found out he was a candidate for a surgery called the Staged Left Ventricle Recruitment to the BiVent. With this surgery it would grow his left ventricle to normal size and then give him normal circulation to hopefully avoid him having to have a heart transplant. (if we didn't go this route we have been told with his anatomy he would need a transplant in his teens). With the help of friends, family, and strangers we went to Boston where he had the first of hopefully only 2 surgeries. He had his 3rd open heart surgery in June and right now his heart is growing and conditioning to be able to handle the load of the work that a normal heart does. He is due to have his 4th open heart surgery in the first of 2014.