Owen is twelve weeks old today! In this short span of time, he has developed a medical rap sheet longer than my resume (and I've held a lot of jobs). He has also been tagged with a number of labels, most of which serve the purpose of categorizing him for medical and therapy purposes.
But most importantly, he's a little boy who has stolen our hearts and in a mere three months, has taught Kelsey and I so much about love, life, patience, and parenting.
So who is Owen really?
We've been spending a good deal of time lately encouraging Owen to gain additional head control. He's doing a great job. He's engaged, feisty, determined. He doesn't let his head stay down and picks it up each time it falls. I think it speaks volumes about who he is.
We notice that he holds our gaze for a bit longer than he did a few weeks ago. We give him time each day to improve upon his visual system. He is having more quiet, alert periods these days and is content to lay on his stomach, improving his neck strength and "worming around" (as Dad puts it), exploring the use of his arms and legs. He listens to the sounds around him and focuses intently on our voices, which have a wonderful ability to soothe him. He especially loves it when Papa asks if he's "ready for milk" (pronounce "meelk").
Kelsey and I find that we are so taken by our little boy. We sit for long periods of time and just admire him - examining his features, playing with his fingers, kissing his forehead. We're smitten. He loves to cuddle and be held and is very affectionate. His favorite is to nuzzle right in the crease of the neck.
So on to the "update"...
I know many of you have been asking about how things are going and we appreciate that you are thinking about Owen. He has gained a mere two ounces in the last two weeks (he now weighs an even 10 pounds) and the vomiting continues. Feedings yesterday and today have gone better and we've boosted the caloric content of his formula with polycose. We were set back a bit by another visit to Children's Hospital on Tuesday - replete with a transport by ambulance over to Seattle.
Owen has been having a very physical response to being put on his back. He spreads his hands wide (in what resembles a moro reflex), stiffens his back and legs, goes wide-eyed, pulls in a big breath and holds it. He then screams. He started having these about a week ago, one or two at a time when on his back on the changing table. I was home by myself Tuesday morning and he had a series of several (dozens) of these in the span of 10-15 minutes and I couldn't snap him out of it, even when I picked him up. So I called 911. It was terrifying - for both Owen and I. Needless to say, we left Children's with good news and not so good news. The good news - these responses are not seizures. Owen was assessed by one of the top epileptologists at Childrens and had an EEG - both of which indicated that these are not seizures. The not so good news is that they were not able to tell us definitively, what exactly these are. Kelsey and I suspect that this is either a fear response, since his vision is not fully intact and he spends most of his time on his stomach, being on his back may feel too vulnerable, or that it is simply neurological (a general statement, I know, and certainly harder for me to swallow given the intensity of his reaction). We've tried putting him on his back on the bed, on other soft surfaces, on an incline, and none of these have worked.
The doctor at Childrens suggested that Owen may be be having pre-migraine symptoms called torticollis (either due to his trauma or his genes). This doesn't necessarily explain the response when placed on his back (although it might), but may explain a few other things. Owen almost continuously holds his head up and to the right these days (this could be a sign of other things as well which I won't go into now as it is too premature). Both the doctor and the resident-in-training noticed this right away and asked (separate from one another) if migraines run in the family. They do - in my family - although torticollis has several causes, including complications in utero and during labor, some of which could apply. Other signs... Owen has never had problems feeding (suck, swallow, breathe pattern) but feeding has always distressed him. He vomits all of the time. He seems to be in a great deal of discomfort and will turn his head and grab at his face. He has recently displayed signs of nystagmus, although like the other symptoms, the latter could simply be from the neurological issues.
We will be taking Owen to a pediatric osteopath (DO) who is one of the nation's best - she lives and works on Whidbey Island and had an office in Seattle for 30 years. She comes highly recommended and we had actually made the decision to do this even before our recent experience at Childrens. Margaret practices cranial osteopathy (which as you can see from the preceeding link - a piece that she wrote - differs from cranial sacral therapy). According to her brochure, her services include "Traditional osteopathy including cranial osteopathy. Addressing such clinical problems as infant feeding and sleeping difficulties, digestive distress, irritability, torticollis, and head shape abnormalities resulting from a difficult birth, chronic illnesses, and developmental disabilities."
None of this therapy would "fix" the fact that Owen has experienced neurological trauma, but the torticollis, if this is indeed what is going on, may be compounding the effects and the cranial osteopathy may relieve some of the symptoms.
So for now, we continue to take one day and one step at a time... Meanwhile, we celebrate our lovely little boy and his twelve week birthday.