Wednesday, September 17, 2008


So Dr Newman just came by to check on Simon and talked to us so sweetly about how she sees our family and our care for Little Shimmy. She gave some wonderful advice about not getting stuck on the details as we tinker but to really be with him in each moment. For me it's the balance between being able to do that and still focusing and advocating for Simon throughout the day for quality of life.

She also mentioned again how sucking and swallowing is really hard work when you're doing them together. He's still very oral and can do one or the other, but put the two together and he's got a serious aversion (certain people and you know who you are...should please refrain from commenting on the previous sentences). He'll suck on his pacifier and swallow some rice cereal but won't do both at the boob. I got it tonight when he was really interested in a bottle of milk but only for gnawing and then equally excited to get a spoonful of rice cereal. However the 30 minutes that I offered him the boob when he should have been most hungry he was shaking his head fairly emphatically 'No I don't want that'.

My job right now is to let go of the intense desire to want to nurse him and know that I can offer him comfort in other ways. Dr Newman said he will write his own story and right now it's not about nursing for comfort. He does other things for comfort and some of them are even things that only I can provide. Speaking of, Simon did his first double take when Jaime arrived tonight. It was amazing to see. He was in his Mamaw's arms (Jaime's mom) and when Jaime walked in and sat down in front of him he turned his head from the book that he was reading, glanced at Jaime, went back to his book and then realized who he had just seen and turned back for a good long eye contact session with his Mama. It was a beautiful thing.

From a more medical front, he's still gagging and heaving some around feeding times but not really losing any volume which is great. He put on 80 grams this morning (about 2.5+ ounces) and seemed to do well with the overnight feeding making it through 8.5 of the 10 hours before waking up to puke a little. We're still on %100 breastmilk and have put on over three ounces over the last three days. Go Gordo!

We're still concerned about the stomach upset and considering an NJ tube versus the NG but not sure about what it would mean for his quality of life (really needing to take precautions that he not pull it out including mittens for the little man and/or even splints so he can't bend his arms to get to his face to pull the tube out). The GI doc made a point of asking how active he was and when I replied "very" she said that it was likely that he would need mittens and/or arm splints. Not my first choice for the little boy that just worked out getting his pacifier back into his own mouth. We're not in any rush so we're holding off on making a decision about that and seeing if he can settle some. The difference is that an NJ tube bypasses the stomach and delivers food right to the small intestines where it's immediately absorbed and since breast milk (or most liquids really) don't need to be broken down it's just that much easier on his body.

We know that we're in for a long haul and I'm still figuring out how to manage the 15 hour days with out frying to crisp. It's challenging. I'm working on it. I did manage to take three separate breaks today and get outside for almost an hour at a time. Jaime and I are still loving each other so strong and as for little Shimmy, he is doing exactly what he needs to, just taking it all in, drawing love and light to him. Even Dr Newman said that stopping by to see Simon was a highlight of her day. I love that he does that for folks. Love it.

Simon had his 99th visitor tonight with his Uncle J (Jamison) visiting. Simon was way into his uncle's sense of style as illustrated by the picture below.

Now the question is who will be lucky 100.

Love and gratitude to all of you out there.



Marsha D said...

Laura and Jaime,
Krista (Molly's Mom) shared your blog with me. (I am Krista's Mom) Just wanted you to know that I am praying for all of you. Simon is an adorable little boy and it is obvious that he is well loved by the two of you. (And many others)
Take care,
Marsha D

josie said...

hello my lovies
wish i could be visitor #100! maybe balloons would fall from the ceiling and the little man and i would dance among the bubbles like on lawrence whelk.
sending you so much love
josie d

abinla said...

This is Alanna from MHC. I randomly checked Friendster the other day and saw the link to this blog. What a journey your family is on! I am so sorry for the challenges you are facing, but so happy to read that you, Laura and Simon are surrounded by so much love. Please know that I am sending every ounce of good energy and peace your way.
You are in my thoughts, alanna