Friends,
It seems to me that one of Newton’s laws of thermodynamics has been at work in our lives these last several days. For every bit of encouraging news there has been an equal and opposite bit of hard news. (Alright, not really Newtonian, but it is sort of how I feel.) Samuel does continue to improve in his ability to take larger and larger feedings. He is now up to 19ml and they are planning on continuing to increase his feedings by 2ml every so often. Bear in mind his goal is 45ml (which is about 1.5oz) by breast or by a bottle. Currently his feeding is done through his NG tube. We are working with him once a day or so on bottle feeding. So far we’ve not made a lot of progress ... he prefers sleeping to feeding at this point. We also have been able to enjoy some very sweet times with him over the last 24 hrs especially. When we’re holding our son in our arms, all the ‘observations’ and ‘concerns’ that we’ve been hearing about sort of fade into the background and we are able to simply enjoy him.
However (and here is where Newton comes in), it seems that every time we meet with a Dr we find out something else that isn’t right with our son’s body. Today for example we got back preliminary results from the MRI he had last night. The resident wasn’t able to flesh this out for us much at all, but he did tell us that while all of the structures in Samuel’s cerebrum are present and accounted for, his cerebellum is ‘under-developed.’ In order to get better details on the brain front, there will be a Neurologist consulted next week. So, our specialist count continues to climb. We’ll try to list them just for kicks (we’ve got to have a spot of humor in all this or we’d spend all day crying). 1) Cardiologist; 2) Neo-Natalogist; 3) Geneticist; 4) Occupational Therapist; 5) Ophthalmologist (Samuel’s pupil’s are misshapen); 6) Neurologist; 7) Endocrinologist (just to make sure his glands and such are secreting what and how much their supposed to); which list does not include all of the folks that will be in the mix to deal with his cleft lip & palate (plastic surgeons, speech therapists, ENTs, etc.) and there is the possibility of a Nephrologist (#8!?) because there are some abnormalities with his kidneys. And there you have it (at this point).
Poor guy has been so poked and prodded over the last 72 hrs. Today he made off good without any new tests except to be pocked once to check to see if he needs treatment for jaundice. He is a little yellow, but not enough that warrants the special light.
Overall, we are doing well, I think. It has been good to be home and spending more time with our other two children. Sara took two trips down to the hospital today, one this morning with me and one this evening with her mother who just got in town this afternoon. We are thinking that two trips a day might be doable, but are having to take it a day at a time.
Attached are some pictures. The Occupational Therapist is having us put the white tape across Samuel’s lip to help him with breathing (opens up his nostril) and to prepare him for surgery (directionally training his skin a little).
Thank you for your ongoing prayers and expressions of love.
grant
