A lot has changed since the last update. Given that the last post was mostly about seizures and meds, it makes the most sense to start with the fact that Jack is off the meds and doing great. He started to reject meds a bit (fight us when we attempted to administer them), although not as much as Harper did. We just felt the time was right to wean him off the Phenobarbital. He never had another seizure, and we are all happier with the meds out of our lives.
Jack is growing up quickly; he’s bigger and cuter daily. He continues to be a big talker and cooer and likes to stare, smile, laugh and talk to mom, dad, or his big sister and make googely eyes. He is big and strong and likes to sit up in the arms of his holder. I spend a good portion of my day with baby boy in my arms as Jack, like his sister before him, does not like to be set down. Unlike his sister however, he is showing signs of being a better sleeper. He often gives us several hours of sleep at night, and has never confused day and night. He wants to be held lying on his side with a pacifier in his mouth to fall asleep these days. For the past month or so, this is his preferred way to fall asleep, nestled in closely and held tight. At night he usually begins in his swing and then joins me by my side after the first nursing (around 2:30 AM). He is a good snuggler.
A few weeks ago everyone in the house was sick and Jack had his share as well. He had a nasty sounding cold in his nose and chest that lasted for about three weeks. I took him in to get checked out twice, but luckily it was not anything more serious than your average virus. It just sounded terrible! Poor boy lost his voice and his cries were wheezy, airy chirps! The doctors said he lost his voice from the post nasal drip causing his vocal chords to swell. I never thought I'd be so glad to hear his cries as when his voice started to return. The cold lingered for quite a while, which was no fun.
Jack also recently had his first round of shots. He cried when he got his shots as if to say to his mom and dad, “how could you let this happen to me?” That evening, each time I set him down Jack would scream the same way as when that first shot hit his leg. He's a smart boy-- same position, oh no! But by the next morning, he was confident that he was safe again and never looked back. He bounced back quickly from the immunizations, and by the next day he was back to normal.
It has been fun to watch Jack’s personality develop. He shares many qualities with Harper, but is certainly his own person. He is mellow and serious; one pediatrician referred to him as “judicious”. He is very aware of the world, but never really bothered by it: he simply takes it all in gracefully. His babbles are becoming more conversational, and I swear he even says Mama sometimes, although it's not yet confirmed to be referencing me at this point. He is very smiley and is beginning to laugh when we play, or sometimes when I happen to tickle him (his side cracked him up the other day). Harper calls him "wide-eyed boy" because he's always engaged and opens his eyes very wide when something surprises or startles him.
Jack is very loveable and fun. For the past couple of weeks, he is discovering his hands-- sucking them, touching/holding them together, reaching for things, and even holding your fingers or a rattle when it is placed in his strong grasp. He also tangles his fingers in my hair from time to time. My favorite place to kiss him is the corner of his mouth/cheek/chin. He smells sweet, even when he needs a bath, and he loves to have babbling conversations.
Jack is Harper's "favorite person" and a very comfortable member of our family. He is really branching out lately, so the next few weeks are sure to be eventful for this curious boy!
Friday, September 14, 2007
It's confirmed: when Ethan and Ruthie make babies, it's electrifying. Harper, and now Jack, had surplus electrical activity in their newborn brains. When Harper was five days old and Jack was two days old, they both started having seizures. They presented differently, but close enough that we recognized the second time around what we were dealing with. At two days old, Jack had a few minor seizures that concerned us, but they were not as intense as the ones Harper had had. Knowing that Harper's seizures went away so quickly and the diagnosis suggests they are usually gone by two weeks of age, we questioned what course to take. Our pediatrician told us to call back if we saw any more seizure activity that day. The seizures continued with increased intensity and frequency, so we arranged to be admitted to Kaweah Delta to begin medication.
When Harper began treatment with Phenobarbital, she never had a seizure again. She was prescribed the meds for six months, but self weaned after about two and a half months. At three months she got the clean bill of health from the neurologist at Children's Hospital and has never looked back (check out her blog to see how well she is doing: harpersequoia.blogspot.com. She is clearly no worse for the wear.)
When we entered the hospital, we expected the same response for Jack. While we waited for the first round of medication, Jack continued to have seizures. He ended up having more than Harper ever did (probably 20+ compared to her 12) and as a result was completely exhausted and had no appetite. He threw up the initial dose of meds that were given orally, so we had to have an IV set up to administer the Phenobarb and some fluids since he had not been eating well. Between the first dose and the second dose 12 hours later, Jack had three more very mild and short seizures. After the second dose, he has been seizure free!
Although this was some what of a deja vu, there were enough differences to keep us stressed, awake, concerned etc. Although Harper's seizures were more violent in the moment, she bounced back quickly and never lost appetite or personality. Jack's seizures on the other hand were a bit more mild, but would wipe him out for hours which in the end is actually more scary. We had good reason to believe that things would end well, and we were constantly reassured by the pediatricians that they would have no lasting effect, but as a parent, you can't help but worry when you see your child in such a state.
Jack is home and doing well. He takes his meds like a champ even though they taste awful, and we are confident that this is all behind us now and he will be off meds shortly, just like his big sister. In addition to this hospitalization Jack has had numerous doctor visits for check ups, circumcision, follow up blood work, etc. In his first eleven days of life, seven of them included hospitalization or doctors/lab visits. Given how well he has bounced back, Jack's parents seemed to be more affected/worn out by all of this than he is. Jack is eating well, gaining weight, playing with us and his sister and doing all the things a two week old does (including about 20 diapers a day).
We are thankful for all of the support and love we received from family and friends who have been outstanding during this time.