It is with great sadness that I inform you all of another CDH Angel. Ireland Rose passed away yesterday in her parent's arms. I look at Jaime and can't help but to think how incredibly lucky we are to have him. I can not even begin to imagine what it must feel like to bury your baby. It's just not right! I know I have said this a MILLION times, but I truly HATE CDH and what it does to these innocent babies! Her parents have posted a beautiful picture of her on their blog. http://lovingourirelandrose.blogspot.com/ Please say a prayer for Ireland's parents and brother during this very difficult time!
Thank you for your continued support for our CDH Family!
A quick update on Jaime...today's weigh-in he was 11 lbs, 15 oz. He gained 5 oz. (or 141 grams) since our last visit. Probably not the greatest, but he didn't lose, so that was good. He did not grow at all either. I swear he looks longer to me, but we specifically made a point to weigh and measure him on the same scale as last time...no change! DARN IT! On the plus side, Dr. Hellerstein said that we are to offer Jaime 2 "meals" a day. We've been trying "solids" for a few weeks now on and off, but she wants him to "eat" daily. This will give him extra calories and nutrients, frankly she feels like he is just ready. So, here is what we are allowed to offer Jaime: carrots, sweet potatoes, prunes, zucchini and oatmeal. The goal is to find a good balance with bowel movements. Lately he's either constipated or has diarrhea...nothing in between. Sorry if that's TMI, but it's what we're dealing with and I have never been one to hold back with details...no matter how "gross." We're due back in 3 weeks for another weigh-in, though she told me we can "stop by" anytime we're in the area for a quick weight check. (Her office is not that close to us....the good drs. never are! ;-)
Now on to Rainbows...oh how we LOVE Dr. Ahuja (hematologist in Cleveland). He said that Jaime's "bleed" is so old and clotted that he did not want to treat it at this point. This was good news. He said the clot will eventually reabsorb and work itself out. WOOHOO!!! He also opted NOT to do any blood work, why create a bleed when you don't have to? So, he'll see him when he does have an active bleed and at that time do any necessary baseline lab work. His theory is, poke them once and don't over treat...especially the babies! YEA! This sure made for an easy visit! I was also able to discuss Jared with him and the social worker...uninterrupted...this was also nice!
Speaking of Jared, he had a good day at school, but a weird day on the bus. Some 4th grade girl was calling him names and even called me a "sh-t." Then, she proceeded to hit his arm. I just don't get why the big kids talk to the little ones this way and bully them. Jared was so upset about this, mostly he was upset because of what she called me. I told him not to worry about her saying that about me because she doesn't know me. (You know mom's are sacred to little boys.) I told him to ignore her and if she does it again, to let the bus driver know. UGH! It's always something when the kids are of school age!
So, that's my update....time for dinner....for all FOUR of us! :-)
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