I've had a number of people lately comment on how it seems as though we are so positive, and that we seem to be such a happy family - but they suggest that this situation must be so painful for us as well. It is. In fact, there are few things that I can imagine that would be more painful than what we are experiencing right now. And the pain is not just felt by the three of us. It extends to our sets of parents, our siblings and to so many family and friends. There are so many people who are affected that sometimes it is unbearable to think about all who are hurting and concerned. But I don't know of a single person in our large web who is not positive or hopeful. Kelsey and I agreed a long time ago that we would do everything in our power to make Owen's life the best we possibly could. To pity him, to pity ourselves or to give up hope would rob him of that right, the gift of life at its best. This doesn't mean we don't have bad days, that we don't get tired of going to the hospital, that somedays things don't feel incredibly overwhelming, that we don't feel angry and wonder why this is happening to our child. We are only human. But the most recent developments remind us that the balance we have right now is very, very fragile and that we must appreciate Owen and each day at hand.
We had another BIG day at Childrens on Wednesday. Owen had a lumbar puncture to obtain spinal fluid for the tests to determine whether he has any treatable metabolic disorders. One is already back and turned out negative. The rest have been sent out to Baylor and won't be back for another week or two. The doctors suspect that these will come back negative as well. Owen also had an EEG which definitively illustrated infantile spasms. We then met with Dr. Simon, the Attending doctor who has been following Owen most recently, and Tim Feyma, the Fellow who saw Owen initially in August.
We were told in our meeting that four doctors (two chief neurologists and two fellows) completed a full review of Owen's records and this, coupled with the results from the chromosomal and metabolic disorders, have led them to a final diagnosis of hypoxia during labor/delivery. They can never be 100% sure in any case, but Dr. Simon feel confident that this is a correct diagnosis. According to the line of thinking at Childrens, a steady heart rate during labor is not always indicative of a healthy baby. They have seen on several occasions where a heart rate never dropped but the baby suffered from hypoxia. Owen's heart rate was monitored continuously during labor and never changed dramatically enough in one direction or another to indicate that there was a problem. According to the doctors we've talked to at Childrens, these events happen, in both hospital births and home births, and Owen was unfortunately one of those who seemed to be just fine, but at some point, wasn't.
The team of doctors had not fully reviewed Owen's EEG and various tests from Tacoma General when they started leaning towards a metabolic issue (versus hypoxia) after the MRI results from last week. The MRI initially seemed to indicate a metabolic disorder, given how globally the brain was affected and how there didn't seem to be any focused scarring at any particular point in the brain. They now realize that what they are seeing is considerable damage throughout the entire brain which indicates a major hypoxic event. This fits with Owen's first few EEGs - almost flat lines - with the hyponatrimia at birth and with the slow growth of his head over the last four months. It also fits with the recent development of infantile spasms, which indicate a serious underlying problem. Fortunately, somehow, Owen's other major organs were spared, which certainly gives him a better chance than most babies with this type of diagnosis.
We will be back at Childrens soon, as early as next week, to begin ACTH (the steroid used to treat infantile spasms), to get Owen on a G-tube (a feeding tube inserted directly into his stomach), to get further genetics testing for all three of us (as a precautionary measure) and to get Owen seen by the neuro development team to address issues of high tone. The ACTH may or may not work - it is our best hope. Cross your fingers, toes, light a candle, pray... we really need this to work. Owen is miserable right now and has so many seizures that we've stopped counting. We will have a couple of days of training on the administration of the ACTH at Childrens and then will be sent home to give Owen his shot of this every day for 2-4 weeks. If it doesn't work in this period of time, then it won't work at all. Regardless, it is a short course and we won't have to give it to him for more than a month. The G-tube will allow us to do a continuous drip of food at night. This will get Owen the nourishment he needs, will reduce the chance of aspiration of milk into his lungs and will hopefully allow him to get better, consistent sleep at night. We held out as long as we could, and hoped that we could get him the food he needed by mouth, but with the Zonegran (appetite suppressant) and the seizures (which make him even more prone to throwing up), he's back to gaining very little weight. We just can't let this go on.
I felt ready enough recently to look back into my mother blessing book which is filled with all of the lovely words given to me by many of the women in my life shortly before Owen was born. I wanted to share a poem that my friend, Angela, sent me. As intensely painful, shocking and challenging the last four and a half months have been, this poem illustrates why it is that my experience is also a treasured gift.
She Who is A Mother
A miracle occurred when the infant was first laid in her arms.
She was transformed from a woman into a goddess known as "mother."
She thought shed known the depths of love.
She though she'd seen the heights of success.
She thought she'd experienced that which is true joy.
But nothing compared to this.
All else faded when her baby drew its first breath,
and she became a co-creator with God.
-Kukana-
I've included a few photos from Grandpa Marshall and Nai Nai's visit a few weeks ago. We are so thankful to have such wonderful parents and their visit was a cherished one.
From Indianola,
S/K/O
