"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Saturday, July 17, 2010

July 17, 2010

Benjamin is thriving at South Shore! In just one week he gained over 1 lb. He's now 6 lbs. 12 ozs. and completely out of his preemie clothes. We were wondering if such a dramatic weight gain over a small period of time was a bad thing, but his team seems happy and will keep him at 30 calories. He's still doing well with his bottle, although he can detect the additives and will usually spit it out and scream bloody murder until he gets straight breastmilk. It's kind of amusing. But, he has to get used to the taste because he'll most likely need the extra calories for a long time. That said, they're trying to trick him by adding a small amount of caloric milk into his bottle for a few days and then gradually increasing it. For example, today he was getting 9 mls of milk and 1 ml of the caloric milk. So far it's working, but I think he's going to catch on pretty quickly!

He had an eye exam on Monday so his new opthamologist could get a baseline and he was extremely pleased with the effects of the treatment Benjamin had at Children's. He said Benjamin won't need another eye exam until the 26th. We were thrilled... he hates his exams so a two week break will be nice!

His new doctors also ordered head, stomach and kidney ultrasounds to follow-up previous diagnoses. His ventricles are still enlarged, but because they have been that way for awhile there's really no concern. Kidney stones are still present and the "mass" or possible hematoma that was in his stomach is no longer visible which is great.

The plan right now is for Benjamin to just chill and continue to grow. Ultimately he'll go back to Children's for a g-tube (gastric feeding tube) placement and to have his bowel reconnection sugery. He doesn't care for his nasogastric feeding tube and tends to pull it right out of his nose. He won't be coming home with this because he could aspirate, and because it'll be a long time before he can take everything by mouth (due in part to his short bowel and his neurological issues), a g-tube makes the most sense. God forbid he gets a cold, the g-tube will be valuable.

Speaking of colds, we were told today by one of his nurses that when we do take Benjamin home, he shouldn't go to the mall or be around too many people. I remember his pulmonary specialist at Children's telling us how scary that first winter can be for parents with a baby that has chronic lung disease. One of Jadyn's first words was "sanitizer" and it's a good thing she knows the importance of it because we'll all basically be bathing in it!

Continuing with the topic of bathing, I got to help with Benjamin's bath this morning. Definitely not a pleasurabe experince for the little guy. The only time he wasn't trying to fling himself over the side of the tub was when I massaged the shampoo into his hair. We love being able to be so hands on with Benjamin. Until only recently, the slightest touch was too much for him to handle. Knowing now that we can calm him down and make him happy by kissing him, caressing his head or patting his little bum is so rewarding.


  1. Oh Jackie... this post made me cry happy tears!! So glad he's doing so well. Love you!

  2. HI, you don't know me, but I am a friend of Kelly's...and I have been following your son's remarkable journey!

    I have a son who was born at 30 weeks...and after reading today's post I wanted to offer a little bit of advise. When my son came home from the NICU we were also told not to go to the mall, stores and such. Someone gave me this advice. People LOVE babies, espcially little, tiny ones...and although being nice and kind and sweet, they just don't know the harm that they are doing by getting in the babies faces. So if you do have to go in public with the baby, keep him in his carrier, attached to the stroller, but cover the stroller with a bug netting. I did this and NO ONE came over to the carrier to "see the baby"!!! People just stay away...maybe they think that the baby is sleeping, or whatever...but it works...and he won't get over heated or anything!

    Keep up the great work you are doing for Benjamin! and Keep up your great work Benjamin! 2 steps forward, 1 step back...but you will all get there!

    (if you ever have any questions or ever just want to vent, please feel free to contact me)