Thursday, September 17, 2009

Things are looking up

I can't help but preface today's post with a comment about the constant mood swings associated with raising Bryce. I am painfully aware that our daily appraisal of Bryce's future oscillates wildly between hope and despair. In fact, I sometimes choose not to post the latest news because I strongly suspect that the following day will bring a less upsetting, if not downright contradictory, update. Bryce (and ^Chloe^) have toed a fine line between sickness and health from the moment they were born, and often even the most experienced doctors don't know on which side of that line they're going to fall. I'd prefer to spare our family and friends the anguish we're experiencing; however, I do want to convey some sense of what it feels like to be a micro-preemie parent. Despite the fact that I sometimes feel like I'm living in a completely unbelievable reality that even the most die hard soap opera fan would scoff at, I do my best to tell it how it is. That being said, I do think that Bryce is going to outgrow his prematurity, and I like to think that someday his story will provide a little hope to others who are struggling through dark days.

The only unpleasant news of the day is that Bryce still has a very sensitive stomach. He is a surprisingly gassy baby, which also makes him a somewhat fussy baby; there have been times that he's screamed for up to an hour, and I can literally hear his stomach rumbling from across the room. Given that all he eats is breastmilk, which is supposed to be the most easily digestible food known to man, I'm a bit worried about what's to come. Also, we have had a couple of spontaneous reflux/choking episodes, which makes it difficult to imagine how Christie will be able to go anywhere alone. It's pretty hard to drive when you have a baby in the back seat who may stop breathing at any moment.

Now, on to the good news! Bryce had another follow-up appointment with the opthamologist this morning, and his retinopathy of prematurity (ROP) has completely regressed! She said he is not completely out of the woods yet, as preemies with severe ROP are at highest risk of retinal detachment until 41 weeks gestational age (next week for Bryce), but she felt that he was very unlikely to suffer that fate. It's a little too early to say anything about his visual acuity, but she said we can expect "visual behavior" (such as tracking objects with his eyes) during the next few weeks!

As far as feeding is concerned, Bryce seems to be doing better. After our experience during the first few days, we reluctantly agreed to pay the outrageous fee of $120/mo to rent a baby scale for home use. Now, Christie can weigh Bryce before and after he nurses to determine almost exactly how much he ate, which will allow us to more accurately assess whether his nutritional needs are being met. Better yet, he was up 60 grams (2 oz.) on Wednesday, and an additional 50 grams today! Hopefully, this marks the beginning of a new trend towards even chubbier cheeks, and perhaps the resolution of some of the feeding issues described above. Print this post

1 comment:

  1. We understand your writings and know the rollercoaster ride of the many "hopes and disappointments" of caring for Bryce. As outsiders looking in on your blog we feel the "good news" far outweighs the concerns. You and Christie have had your hearts and emotions spiral downward as far as any human being could know in the loss of precious Chloe. Of course, you are "gun-shy" at this point as you haven't had time to grieve and heal. I spoke to my therapist at Courage St. Croix about Bryce. She said that the news that he should have a good neurological outcome is HUGE!! She said she has witnessed so much of the opposite that this news outweighs all else. Alex had tummy problems as a small baby. Amy used to face her forward and slowly massage her tummy. She could scream for a long time. Doctors claimed that she had celiac disease which she seems to have outgrown and at the time, changed her formula. Amy could tell you more.You have the best doctors, so trust in them. Take comfort in looking at Bryce's birth picture and then Bryce today. Unbelievable.
    I go to Adoration today from 1-2 P.M. I will offer it all for you. I agree that Bryce will someday witness about this to help others.
    Love & prayers,