Picking Battles

      Well I'll give a bit of an update first, so Jeffrey fell ill 2 days before his expected cardiac cath so he was not able to have it done. His nose was apparently coming out of his eyeballs (his complaint, not a diagnosis!). It has been re-scheduled for March 18th. He has a VP clinic appointment for his throat/speech March 13th. Neuromuscular appt and EMG and E.N.T April 1st. He also has a sleep clinic on April 9th.

     With Jeffrey we're always trying to find balance. I find as he grows, it gets harder and harder. Do I let him play hard with all the other children? Even though it sends him into fits of coughing and makes him exhausted or do I force him to rest and slow down?

     He's only 32 pounds and barely maintaining that plus he's a picky eater. Do I force him to eat the food he cries is disgusting? Do I only cook food he likes (pizza pockets, spaghetti, mac&cheese, toast)?

     What about his sleeping arrangement. He refuses to sleep in his own bed because he's scared of the 'bad ghost' in our house (according to him). I let him sleep with us because I have always enjoyed bed-sharing but now it's to the point he wants one of us to cuddle him to sleep.  I have no problem with that personally but would it be better for him in the long run to sleep on his own?



   

Double Inlet Left Ventricle

     No matter how many times I research my sons  defect I can never get enough. I always feel that I'm not as aware of his heart structure as I should be. He has Double Inlet Left Ventricle, (large) Atrial Septal Defect, Ventricular Septal Defect and Pulmonary Atresia.

 
      Double Inlet Left Ventricle


      DILV occurs in 5-10 of 100,000 births and the cause of this defect is unknown. It is known as one of the single ventricle defects. He has a large left ventricle (pumping chamber that provides the body with blood) and a small right ventricle (pumping chamber that provides lungs with blood). In a normal heart the right and left ventricles get blood from the right and left atria's. Oxygen-poor blood comes back from the body to the atria's. The right ventricle pumps blood to the pulmonary artery, which carries blood to to the lungs to pick up oxygen.

     The blood now is oxygen rich and goes to the left and right ventricle. The aorta carries the oxygen-rich blood to the body.

     In DILV however, only the left ventricle is developed and both upper chambers put blood into the that ventricle. This means that the oxygen-rich and oxygen-poor blood is mixing and that mixed blood is pumped into his body.

     Atrial Septal Defect (ASD)


     This defect enables blood from the left atria and right atria to mix. In a normal heart the two chambers are seperated by a septum. His septum is missing and allows the oxygen-rich blood and oxygen-poor blood to mix.

     Ventricular Septal Defect (VSD)


     VSD is a lot like the ASD but only with the bottom chambers. The right and left ventricles.

     Pulmonary Atresia (PA)

     PA is a malformation of the Pulmonary Valve in which the valve fails to develop. The valve is completely closed and restricts the flow of blood from heart to lungs. The pulmonary valve is on the right side between the right ventricle and pulmonary artery.




     DILV requires a number of open heart surgeries. Jeffrey required the Norwood surgery, Glenn, and Fontan. He requires extensive speech therapy and many specialists but to see him you wouldn't believe he lives with multiple heart defects.

Surprising Me Everyday

Today we had Reach over to finish our transitioning to School assessment.

It always amazes me how far he's come. This child used to scream and cry when strangers came near him or tried to talk to him. It was traumatic for him to even go to the mall and shop with us don't even get me started on doctors appointments.

Today, he knew Peggy he's met her once before and instead of being distressed about her visiting him he was EXCITED. I know a lot of parents won't realize what an amazing thing this is...but it is basically a miracle.

My son has zero attention span. I try to teach him something? No way! He wants nothing to do with it and wants me to be quiet. Watching him with her was like another child had taken up residence in my own.

He listened, and stayed focused, and tried hard to do whatever she asked of him.

I haven't been given the results of the assessment yet, but I'm hoping that she sees in him what i do. I admit, there are things he's behind in but he's made such progress.

To School or Not To School

This question has been bugging me for MONTHS. I don't know if parents of healthy children stress this much about school but it has made me lose a LOT of sleep.

If I send him, will it be too early? Where I live you can send your child to school the year they turn 4 or the latest is the year they turn 5. Jeffrey turned 4 in January.

If I send him early, will it stress him out and school will be forever ruined for him? He gets sick easily, will he get really sick? What if he falls? He's on blood thinners...what if no one notices and he bleeds internally? If he goes how tired is he going to be, will he be able to make it all day every day?

If I don't send him, how behind will he be? Maybe he would've been fine and happier. His social skills would get better definitely. Will he never catch up? Am I starting to stick him in a bubble and attempting to keep him from the world? I need to learn to let him go and spread his wings but I don't want to be kicking him out of the nest.

I've registered him I decided to do a trial run I can always take him out if its not working. I feel this is my best option.

I never expected these decisions to be so difficult. Even heart surgery isn't a hard decision, he needs it end of story.

Welcome!

Hello! Let me start off with introducing myself.

     I'm Ashlee, I'm 22 (going to be 23 in less than a month) and I'm going to be the author of this blog. I like to crochet (though its sometimes aggravating), read (almost anything from Stephen King to Jodi Picoult to James Patterson), and write (though I often sound rambly).

I'm a full time working mom and I love it. I am very fortunate to work for some pretty amazing people who understand me and my situation. I've been with my significant other for 6 years now and he is the father of my son.

Speaking of my son, he's 4. He loves the water, Pocoyo, Blocks, Cooking, and making a mess (but not of himself!). He also has some issues. He was born with double inlet left ventricle (hence the name of our blog), vsd, asd, and pulmonary stenosis. He is also going for genetic testing for digeorge syndrome and to a neuromuscular specialist.

He has had three open heart surgeries his recent one being January 2013 for his Fontan.

This blog is going to be me complaining, whining, crying and venting about anything and everything related to having a child with severe defects/disabilities (though i don't like to call it a disability).

If you have any questions, suggestions, or requests for future blog posts let me know! Send me a message, comment, etc.