Month: September 2011

A Day in History.

So it is official!

HHS Secretary adopts recommendation to add Congenital Cyanotic Heart Disease to the Recommended Uniform Screening Panel (PDF – 212 KB) 09/21/2011

I just want to thank a dear friend of mine, a friend that I am so honored to know, for 2 straight years she spent fighting for this.  Fighting for every newborn baby to have the chance to be screened for a critical congenital heart disease. 

Baby’s are tested already for hearing and a whole host of metabolic disorders but the most common defect in all newborns was not being tested for.  It was a huge gap that caused many unnecessary deaths…but it is now closed.  Thank you Annamarie, and all the organizations that helped and supported the effort as well. 

Thank you, thank you, thank you.

Your commitment is nothing short of awe-inspiring. 

Thank you.

For information about Annamarie, #1in100, and the incredible work that she does in not only Congenital Heart Disease but also in newborn care in general please take a look at and support these organizations.

http://1in100.org/

http://newborncoalition.com/

If you would like to learn more about why routine testing of newborn oxygen saturation is so extremely important please read this story.  It is a heartbreaking story of a fellow heart Mom whose daughter lived only a few short days because of an undiagnosed CHD.

http://www.corasstory.org/

And please remember that as states, hospitals, and clinicians slowly begin to implement the new recommendations, please ask your health care providers to check the oxygen saturation of your newborn at birth.  Even writing that in a sentence sounds so ridiculous.  They check a newborns hearing at birth and not their oxygen levels? YES. 

And to make things even more ridiculous sounding, checking a newborns oxygen level costs pennies, is non-invasive, and takes just a few minutes. 

In the words of Annamarie  Know More.Do More

So proud to call you my friend.

The Food Battle Continues….

So, I have not been updating lately.  I guess life has just been too crazy. 

Logan is doing GREAT!!! I feel finally that for the first time in his life he is a (relatively) normal baby that is happy and playful.  His oxygen levels are definitely up and it is making a huge difference in his quality of life.  He isn’t sleeping all day anymore, and actually he has only been taking a morning nap and afternoon nap lately.  He is so much more interested in things.  Things that used to frighten him are now interesting and he is much less scared of people. 

He still doesn’t let hardly anyone hold him but he won’t scream bloody murder if a stranger looks at him or tries to get near him (just not too close though…)

He is not sitting up on his own yet, although he is getting so close and can now sit in a Bumbo (a soft little seat that gives baby’s support) and is really enjoying this new view of the world.  Most people who meet Logan ask if he is 8-10 months old.   I do agree that is about what he looks like physically.  He is still in 6-9 month clothes and 3-6 pants.  Believe it or not though, he has officially staked his claim on the weight chart.  He is registering in at about 1-2% but I will take it!  Much better than his previous -45% place.  For height he is about 20% and I have to say it is all in his head and torso.  He still has puny little legs that are still curled up most of the time. 

Logan still does not eat food.  I am okay with this.  He has an incredibly small stomach capacity (which is  a know heterotaxy thing) and is not comfortable with the feeling of anything touching his throat.  Before in this life things that touched his throat were NG tubes and ventilator tubes, so he has a pretty strong visceral reaction to things being swallowed.  He is okay with food that almost melt in his mouth.  Rice starch biscuits are his favorite.  He occasionally will nibble a tiny piece of cake, but this airy/starchy/dry texture is the only texture he will allow near his hand or mouth.  If I hand him something that is cold, slippery, wettish, warm, surgery, cheesy, or any other texture other than room temp and dry, he acts completely repulsed by just the feeling in his hand, let alone put it in his mouth.  Just so you know (and everyone asks this…) yes! I have tried pasta, fruit pieces, vegetable pieces, cheese pieces, chicken, egg, toast, pancake, waffles, french fries, cereal, pudding, pediasure, chocolate milk, ice cream, yogurt, and anything else you can think of that seem like it would be ‘baby friendly.’  He literally only wants rice biscuits, cheese puffs (but not the really cheesy ones), and these new vege stick things.  That Is It. 

occasionally I will get him to nibble on various foods…I have had luck with a cucumber slice, a french fry, a cheese it, and a green bean.  However, as soon as he tries to swallow these ‘non-melting’ foods he begins to gag, choke, and then vomits.  And then vomits some more.  And more and more.  I am not going to stop trying though, although I am taking things very slowly because it is a very fine line between encouraging and in a positive way and reinforcing his negative emotions with food. 

I am secretly very happy that no one wanted to attempt a Gtube on Logan.  Although he may have put on weight quicker I think that it would have perpetuated his eating issues and I have heard nightmare stories of 4 and 5-year-old that still don’t allow food in their mouths.  Slow and steady is what is going to win the food battle with Logan. I think it is hard to see how skinny he is unless you see out of clothes.  He has no little baby rolls just skinny arms and legs.  Also, doesn’t his incision look great???  Dr. Del Nido…LOVE YOU!!!!

If there was one picture that could describe how he is doing right now…it would be the following.  Just two months ago Logan would never have smiled like this.  He smiled occasionally but never with that much joy.  Just a short two months ago, he was scared of taking a bath, he was scared of all people, he was scared of new noises, textures, places.  He slept all day long and needed to have his blanky, binky, and his swing just to feel secure. 

Now today at 15 months he loves the bath.  He loves going places.  The wind blowing on his face doesn’t make him cry anymore.  He is somewhat more tolerable of people (just don’t touch me or get too close  please…. 🙂 and overall for the first time ever Logan is  joyful.  You can see it in this picture…