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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G-J tube

Lalo is slowly getting used to his new feeding tube. The main issue is that his reflux is still present. We met with Lalo's GI doc again and we have decided to move to a G-J tube. This is essentially the same thing as the gtube just with an extension that bypasses the stomach and feeds directly to the intestine. This should stop the reflux. The doc was going to go conservative but Lalo showed him a relatively small vomit and he said we need to move forward. Which is fine by us! It will be nice to have a relief from the stress of poor weight gain and the fear of aspirating. The doc was also pretty confident that if we can get Lalo to 9 mo or a year he should be able to get over his reflux. Fingers crossed!!

We also had appointment with an eye doc. This one was uneventful, which we like. Basically he would like to follow Lalo a little closer but no glasses or major issues! Just a slight tracking delay to the left. He did look at the MRI of Lalo's head after the surgery but felt like the damage to his optical nerve might not be significant and Lalo will hopefully be able to overcome any issues, and what he sees in Lalo's response to his tests, he should do well.

The boys on Lalo's 6 month birthday

Ready for some football

Rockstar

Caleb and Lalo

Snag update

Since radiology wasn't on hand at the hospital on sunday and we have the world's greatest surgeon - he just came in to replace lalo's gtube. We felt bad disrupting his day but he was okay with it because he was concerned after surgery about the size of the button he used. Since Lalo is a chunkier guy (yes weight gain is still an issue, and no, I don't get it either), he wanted to switch out for a bigger button in the next week. So, we were only at the hospital for about 3 hrs and got him all fixed up. We are going to try out hardest to stay out of the ER - overheard of at least 3 kids with fevers and 1 kid being asked to put on a gown because they suspected RSV. We used purell the whole time and tried to keep him covered in his carseat as much as possible. And his mommy is going to be extra special careful not to pull out his tube (Lalo years from now you are allowed to use this for as much ice cream as you want).

Lalo also had his assessment for the county's early intervention program. Three therapists came to spend a few hours with us. Overall, they were quite impressed by him. That seems to be the general consensus when we meet any new healthcare provider - he looks great in person, compared to what they were expecting based on his charts/history. It really reminds us how far he has come everytime we hear it. Anyways, in most categories he scored right on track or maybe a month behind. However, in the gross and fine motor skills he scored as a 1-2 month old. The fine motor skills are probably scored a little too low because he isn't using his right hand nearly as much as his left. Gross motor skills don't surprise us at all because he spent his first 4 months of life in a hospital bed and half of that time heavily sedated. We have made lots of progress at home in the last month and can't wait for him to recover a little more from surgery so we can go back to tummy time. The county plans to provide physical therapy once a week. As for speech therapy (they do feeding at this age) they are not recommending any therapy at this time until we get clearance from our GI doctor that it's okay to be working on. Our GI dr at our visit didn't even want to talk about oral feeds until we got his reflux under control. Which brings us to his reflux...

His reflux is still way out of control. We are still on continuous feeds and he is still vomiting throughout the day and night. His weight goes up and down just to make sure we are gaining more gray hairs. His weight on his home nurse's scale yesterday was 15 lbs 9 1/2 oz, which is down almost 4 oz from Friday. We have a weight check at his pediatrician tomorrow so we'll see what she says. We knew that the gtube surgery wasn't likely to help much with reflux, but we were hoping it would help a little. We have another 2 weeks before we see the GI dr, so hopefully if it's still as severe he will have some more suggestions for us.

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