Thursday, October 28, 2010
And then transition to fiery reds and slate blue all in a matter of hours.
If it didn't give me panic attacks that WINTER is coming, I might actually enjoy autumn in all its juxtapositions. At the very least, it gives me an excuse to use the word juxtaposition, as opposed to winter which only makes me say, "I HATE COLD."
Thursday, October 21, 2010
At this time of year, I am also glad for candy corn. I eat so much that my teeth ache. My favorite are the indian corn variety, but I haven't been able to find those this year. I've made do with the pumpkins. I like to bite off the green first.
Most of all, I'm glad for orange toys and brothers who love each other.
Monday, October 18, 2010
We're nothing if not consistent, right?
At least the boys and I have changed faces and clothes and hair, but Shane apparently still favors blue polos with rolled up sleeves and hair that it desperately in need of a cut. He got it cut this week. After our photos. Of course.
Photos by Beth Fletcher Photography
Friday, October 15, 2010
Impatience and a painted bust
I kept you close to me close to my ear
All For Myself ~ Sufjan Stevens
I've been overwhelmed lately by the desire to bury my head in the sand, while holding my little family close. To shut the drapes, turn off the lights, and hide inside under a pile of blankets. To pretend I don't hear people when they ask questions. To smile and nod instead of answering. To run away and hide and find a beach far away from everywhere and just be.
Photo by Beth Fletcher Photography
Monday, October 11, 2010
On my plate today is making medical packets for our sitter and each set of grandparents to keep on hand, should Tommy have a seizure while with one of them. Also on my plate is trying not to call the sitter every hour. I haven't been apart from Tommy since this all began Monday evening, so leaving him to come to work today was harder by far than returning after either of my maternity leaves.
It's been a long weekend. Luke is having an emotionally difficult time with everything. Shane and I are, too. While we are still so unbelievably thankful for all of those normal test results, we still don't know what caused the seizures. Or if they'll happen again, so we spend all day hovering over Tommy, afraid to let him out of our sight. If he spaces off for even a second, we're saying his name and trying to get him to refocus.
It's hard. I'm so happy for my otherwise healthy baby, but I wonder when I'll ever be normal again? When I won't check on him all night long, when I won't worry at every strange movement or look or even things that he's done before that I now wonder whether or not they're normal. And right now, in every single way, I just want normal.
Saturday, October 9, 2010
I am really, really tired right now, in ways that go beyond just sleep deprivation. But I can't let another moment go by without saying thank you for all the emails, comments, and tweets. I wish I could respond to them all, but life keeps pulling. I will say that I read them in the hospital, over and over, and felt so thankful, so blessed to feel such an outpouring of love and support. Thank you.
Wednesday night, Tommy had another seizure. It was both less scary and more scary. Less scary, because we knew what it was this time. More scary, because he was having another and we didn't know why it was happening. We called our pediatrician and after assuring the receptionist that no, we did not need to call 911, she passed the message along to our doctor. The nurse called back almost immediately and said that our ped was in the process of getting us a bed at the hospital and she'd call back as soon as she had more info for us. (Side note: I love our pediatrician and if you live in the area and want a recommendation, please email!). Although Tommy's seizure only lasted a little longer than Monday's, his postictal state lasted longer this time. We managed to get ahold of my parents, who said they'd meet us at the hospital to take Luke. Luke, who once again, was so brave and as soon as we said we were leaving, he grabbed his shoes, hat, and a coloring book and pen. I am so proud of him.
By the time we got to the hospital, of course, Tommy was ready to run around and seemed so normal. We got settled in and the only highlight was the cutest hospital gown ever. I couldn't stop myself from snapping pictures. We were still aiming for sleep deprivation for the EEG, so we let him rearrange the room for as long as he could happily stay on his feet.
He didn't eat any of his dinner, likely because he had a seizure right after dinner, so by 8 he was starving. We also discovered that the cafeteria was closed and the only snacks available were in the vending machine, so my friend Mark brought us cheese, fruit, crackers... and Mountain Dew, which is important because we had to stay awake til late o'clock.
Tommy was a total rockstar, despite the heplock in his hand.
He made it until 11, when he crashed. Literally, his head slumped forward and there was no waking that boy. The nurse came in and gave us the green light to just go to sleep--thank goodness. I was amazed at how quiet the floor was compared to labor & delivery. Tommy woke at 1 in the middle of a night terror, but once we settled him back down, we slept until the nurse came to wake us up at 4. Keeping Tommy awake at first was a little difficult, but Shane ran and got us McDonald's and the prospect of hot food perked up Tommy a little. Once the sun started to rise, Tommy was enthralled by our view of the staff parking lot, with cars pulling in and out and the garbagemen out collecting trash.
Finally, it was time for his EEG. He screamed the entire time the electrodes were placed, but the tech was gentle, soothing, and wonderful. He fell asleep very quickly and slept through the entire test. The EEG results were normal, thank goodness. Then we started the MRI nightmare. They told us to have him asleep at 9:30, but then didn't come to take him until 11. At this point, he'd been asleep for an hour and a half, so guess who woke up the instant I laid him on the table?? They sent us back upstairs and told us to all them as soon as he went down for an afternoon nap and they'd get us in.
Finally, we met with the ped neurologist (side note: if you live in the area and want to know who NOT to go see, please email me), which was a total nightmare. She walked into the room and stated that she didn't think he was having seizures, which made me happy. Until she added that she was pretty sure he was just having a temper tantrum and holding his breath to the point of passing out. Uh, no. She made me feel like I was being dramatic and attention seeking and I wanted to push her down. I explained that I found that hard to believe because the first one occurred with his EYES OPEN and the third one happened when he was smiling and walking toward me, not when he was throwing a fit. At that point, she did agree with me, but it made me so angry that she'd made up her mind before even meeting with us. She said she'd come back and meet with us after the MRI and then she prescribed him Benadryl in the hope that he'd sleep through it. (The hospital we were at does not sedate children under eight years of age.)
At some point, Sarah brought us lunch and running downstairs to see her and get a hug was one of the bright points of the day. Round two of the MRI nightmare began shortly thereafter. We called as soon as he fell asleep, but again, we waited over an hour before someone came to get us and again, he woke up soon we laid him on the table. After a few attempts where he absolutely freaked out, they said the last attempt was to have me go in with him. So I did. It was absolutely the last thing I wanted to do, but how could I not? I laid on my stomach and was able to get my head on his chest, far enough up that he could look into my eyes and get a hand into my mouth. We made it through all 25 minutes this way. I felt myself starting to panic about halfway through, with the different noises and the closeness of being in there with Tommy and on my stomach, no way to see out of the machine. I played mental games and counted and focused on his eyes to keep myself calm. It was scary. The moment when I saw the light from the opened door and knew the techs were in the room to let us out made me so happy. Shane said my face was so pale afterwards, and I was just SO GLAD to be out of there.
After this, we got back to our room. And waited. And waited. The nurse came in and told us the MRI was normal. The bloodwork was normal. Everything was normal, except for my one year old having three seizures in four days. Julie ordered us a pizza and the most disgustingly buttery breadsticks ever. At 5PM, we started asking about the doctor. The nurse started paging and we sat. And sat. Tommy kept waving ByeBye to us and running to the door.
Tommy got more and more tired and frantic and we became more and more frustrated, to the point of discussing whether or not we should simply sign out AMA. Finally, at a little after 7, the doctor CALLED. No discussion of the test results. No discussion of long-term prognosis. Nothing. She simply told me she was calling him in a prescription and advised that I not let him play unattended in the bathtub (SERIOUSLY). At one point during the conversation, she asked me his name. It took every ounce of strength to not slam the phone into the wall over and over again. I got off the phone with her and hissed to Shane that we were never, ever seeing that woman again. When the nurse finally came with discharge papers, Shane asked when we could pick up his medical records because we were getting a second opinion. She seemed taken aback, but honestly, I've never seen a doctor with worse bedside manner than this woman.
We finally made it home and all passed out until 7:3o that morning. We were able to obtain our medical records easily and headed to University of Chicago, where we met Julie for lunch... and then met with a team of doctors who seemed to actually care. Doctors who, instead of trying to make up a reason for his seizures, admitted that they didn't know the cause, but that they understood why we cared. Doctors who are willing to work with us and who have ordered more tests and given us several treatment options and it was like a breath of fresh air. We left feeling hopeful. Although we wish we could have an answer, we are counting our blessings that we know that they aren't being caused by anything big and scary. I know that sometimes seizures JUST happen, for no reason, but three in four days is so troubling. My heart still leaps constantly if Tommy isn't in my vision. I spend every moment wondering if movements that seemed normal a week ago aren't actually normal. If he stares into space, I'm saying his name over and over to draw his attention. It's scary and I keep flashing back to Monday when his lips were blue and I thought he was going to die in my arms.
But I know this about Tommy. He is resilient. He is miraculous. He was born in the caul and although he's given us heart attacks from the first moments of his life, he's lucky and we're going to be okay.
Tuesday, October 5, 2010
Last night was heart attack number three. It's really hard for me to type this and I struggled with whether or not to share this, because there are some things that you just don't want to say. And yet, there are also some things that you need to say, but I also want to say that we have the best care and have tests scheduled and someday, I am going to ground him SO HARD for scaring me.
Last night after dinner, Tommy had a seizure. I didn't know it was a seizure until he clamped down on my finger so hard that I didn't know how I was going to get it out of his mouth. We thought he was choking because he fell on the floor and his eyes were closed and his lips were blue and his little body was so stiff. I was holding him and I've never been more scared in my life, but we had the best 911 dispatcher ever (seriously, we owe our lives to these people) who talked us through it and helped me realize that he was breathing and confirmed that it sounded like a seizure when I said I thought that he was having a seizure. He opened his eyes finally but wouldn't look at me or couldn't look at me and then the first responder arrived and said, "I was here the night he was born!"
Really. He said that. I wanted to hug him for knowing just what to say. As if wanting to see someone who'd seen him as a newborn, Tommy opened his eyes and focused and he was still SO PALE but he was responding to us. Then the police cars and the firemen started arriving and I kept thinking, Gosh, the neighbors must be tired of us. And the first responder kept telling everyone how Tommy was born right here and when the EMTs came, one of them was there the night Tommy was born (my choirs of angels singing EMTs, remember?) It made my heart feel good because I trusted her. By this time, Tommy was totally awake and alert and trying to get off my lap and get into the EMTs' bags, as only Tommy could do. We almost felt silly calling then because he was this healthy, happy toddler, you know? Except that he gave us the scare of our lives. We decided to instead get him into the pediatrician first thing instead of transporting to the ER. (And my Lukey was so brave through all of this and sat on the couch and told everyone how Tommy was his little brother and how he was excited for Halloween and he told me later that he was a little scared but you wouldn't have even known.)
A few hours after they left, Shane and I remembered something that happened Sunday and realized that maybe he had a little seizure on Sunday. After talking to the doctor, he's pretty sure that both were seizures. And although my mama instinct tells me he's fine, every time he moves funny, my heart races and I keep thinking of his little closed up face in my arms.
I know this is disjointed, but I'm so tired. I was up every hour last night checking on Tommy, who slept just fine. Of course. And now I'm thinking ahead to tomorrow, when I have to keep Tommy up until midnight so that he's good and sleep deprived for an EEG (because he's had neither a fever nor vaccinations any time recently, we can't just brush it off as a febrile seizure) Thursday morning. And although I don't really want diagnoses or guesses at what's going on with him (seriously, I'm not even Googling this), I would like to know how on earth I might keep a baby awake until midnight, because APPARENTLY I can't give him caffeine. I know, right? I'm tired just thinking about it.
Right now? I am so tired that my eyes burn and my legs hurt and I would like a big hug. The kind where you can just put your head on someone's shoulder and not think for a minute.
Monday, October 4, 2010
This was us, yesterday. Not the most flattering picture and a little blurry, but so indicative of what babywearing is. I was on day two of a migraine. Tommy was on day I don't even know but it seems like a million of his molars tearing into his gums, so much that his bottom gum was bloody. He was miserable. I was miserable. We tried everything, but nothing worked until I put him in the sling (my favorite, the Hotslings AP... a casualty of the recent anti-babywearing stance). He felt better. I felt better. We just breathed in those moments of closeness and relaxed.
Here's the thing. Yes, babywearing may be dangerous if done incorrectly, but so are carseats if used incorrectly. Instead of recalling carseats, we've educated people. We've made carseat installations easy to obtain at most fire departments, police stations, or hospital. It's true, we've never installed a carseat ourselves, preferring to let a professional do it. And as one fireman told me, they're happy to do it, rather than see the results of an improperly installed carseat post-accident.
And why not do the same with babywearing? Now, I'm not proposing that we require fire departments to teach new moms how to wear a baby (how funny would that be?), but instead of blanket recalls, how about education, a call to action? Campaigns on the benefits of babywearing (because there are so many), babywearing classes at libraries, a push to make sure that all slings and carriers sold are safe, and mother-to-mother education. Know someone who just had a baby? Show up at her door with a casserole and all your baby carriers. Educate. Spread the word that baby carriers are safe and best of all, get out there and wear your baby.