Our cuties!

Our CDH warrior!

Brothers

Apparently a photo shoot is kind of hard with 2 under 2 years old ;)

CDH Awareness

Hi to all my loving followers -

Usually mom & dad keep everyone in the loop with posts and pictures, but today it's my turn.  I need everyone's help.  Tomorrow - 3/31 - is CDH Awareness Day.  CDH is still a big part of our daily lives and like most CDH families, we had never really known about CDH until my diagnosis.  This defect still only has a 50% survival rate.  I want to help change the future of CDH by spreading awareness, so one day research will make this a 100% survival rate and lessen the long-term effects.  Here's some ways you can help me do this (I'm only 6 mo. old after all)...

• wear TURQUOISE tomorrow, when someone tells you how fabulous turquoise looks on you (guaranteed!), tell them about CDH.  Get some info here.
• Spread the word about CDH to just 1 other person.  Imagine how many people we can tell together.
• Donate blood.  Babies on ECMO, like I was, receive countless blood and platelet transfusions.  I saw that red cross cooler many times a day during my 2 weeks on ECMO.  Here's a link to schedule with the American Red Cross.

Look forward to some adorable pics of me and my brother sporting our turquoise tomorrow!

Thank you all!
Lalito xoxo

Slacking part 2

Well, it was a long day with no progress. Our surgeon got stuck in his surgery before ours and we didn't get back until 4 hrs after we were scheduled. Hope that child is okay! Lalo did pretty good with the delay considering we had to stop feeding him at 3 in the morning and that he wasn't able to catch a solid nap. When the surgeon did finally come to update us after, he told us Lalo had done perfect and was waking up just fine, but they were not able to get the j tube through. They had done an endoscopy as well (down his esophagus with small camera) and everything looked fine - esophagus, stomach, pylorus. However, the j tube was just too big to go through since he still young/little. So he left with the same tube he came with and we are back to the drawing board. There are a few other options but the hope is still that we can get him to a point of outgrowing this. We just need to make sure he gains weight and doesn't aspirate. The surgeon says we have done a good job keeping it up so far, so just keep doing what we're doing...no pressure!!

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Slacking

We are so behind on blog updates! We are finally finding the time as we hang out in the pre-op area at Hopkins. Nothing to worry about, just the switch to the gjtube. It is usually done by a radiologist, but his gtube opening is not big enough for it so they decided he needed to go under anesthesia for it and his surgeon is going to do the switch. Should be a very simple procedure and we shouldn't have to hang around very long.

All this hanging out at Hopkins lately has been great for our little social man. A couple of weeks ago we got to meet up with one of Ls primary nurses in th NICU. This morning we got to see the PICU fellow from Ls run on ECMO. Both were so happy to see how well he's doing and it really reminds us how far he's come. We were thrilled to get another chance to see these 2 important people in our little guys life!

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