Monday, October 12, 2009

Mike and I got some wonderful news the other day. All of Tomas' holes in his heart have closed. He is not even considered a cardiac patient anymore and only has to go back in 1 year for a follow up. I am so happy I can't describe it. His cardiac issues were never his biggest problem but they always exacerbated the other ones because many doctors were afraid to use certain drugs, or classified him as high risk . Now he can be considered normal for treatments. Plus that is 1 doctor off the list of the ones he was seeing regularly.
He has had some great social growth in the last few weeks and has now figured out that if someone else is holding him and he can see me than surely I can't be the one holding him, and he cries. I like to call it the "not the momma" syndrome. The big deal about that is it is average for his age - meaning he is on target for at least one of his mental milestones. He has also figured out that if he can't see you, you are still there. He lifts his head out of his car seat to look over at Victoria, puts his head back and waits a few seconds, and then does it all again. Very cute. He has started vocalizing a lot more and now will call out for attention, especially if the girls are nearby. I can't imagine why, but he seems to love the chaos they bring with them.
I also followed up with the new GI doctor and we went over the plan again to get Tomas on oral feeds. First step was to reduce his calorie intake back to the normal concentration on his formula. I did that last month, and his weight remained the same for that month (no surprise). He is 9 months old and weighs 15lbs. Next up is to retry him on regular infant formula (milk protein based) instead of the Nutramegin. I'll be trying that next week to see if he can process the proteins without fussiness. All the while his calorie intake should be small enough to make him burn through a lot of his body fat so he can get hungry. When he is ready I'll take him off his continuous feed for several hours, allowing him to get really hungry, then give him a small amount of formula by tube into his stomach. The idea is that he should be so hungry his stomach will process the food quickly and not try to retch or gag or reflux it up.
If we can retrain his stomach then the battle is won. It then becomes a matter of teaching him how to eat. He is very interested in food but does not know how to move it through his mouth properly. It is just like when you first spoon feed a younger baby. It will take patience for sure. Also, if his stomach stops trying to send stuff back up and allows food to move through without the retching his future surgery should go much better.
Speaking of the surgery, Mike and I found out Tomas has another hernia, this one in his intestinal tract below his left lung. That makes 4 hernias for my little guy. It can be repaired with the others, but that surgery is turning out to be huge and I am placing bets now that the docs will tell me they aren't going to be able to do it all at once. I meet with the new surgeon (insurance issue) next month.

When I had him at his new Endocrinologist last week, the doctor said something that really got me thinking. He said the ironic thing about these kids is they typically have major heart issues but are also the kids with the biggest hearts, and that they are sent here for us. I think that is a lot of pressure for one little guy. If he should grow up to be moody and tempermental like the rest of us he is somehow not fulfilling his purpose?


  1. Hi - just found your blog through jaxsonsfight. You're kiddos are adorable. Look forward to following along on your journey. :)

  2. Hi, I saw the comment you left for Jax and wanted to come by and say, hi! Hope you don't mind. Tomas is beautiful, Congratulations. I have a daughter with Ds, she is about to turn 1.
    BTW, your girls are lovely too!

  3. Hi Kirsten, I hope your nephew is home safe and sound so, so, soon. What a great Aunt you must be.

    Stephanie, your daughter is just precious. I saw Jaxson's link on a friends blog and he just wrapped up my heart in an instant.

    Blessings to you all,