Thursday, September 22, 2011

The Second One....

April 18...time for our second NICU follow up. I frankly don't care much for this doctor. She's a neuroscience developmentalist. She's a little too...frank. I need to be treated kind of gently. I know that my babies came early, I fully understand the risks associated with that. She's kind, but too....too....real. She points out that the girl baby has an intention tremor in her right hand...something I'd noticed but chose to ignore. She's had high muscle tone for months, but she's been making huge strides in my eyes...she's close to crawling, she can sit other words, she's meeting her developmental milestones, albeit a little slowly. "Developmentally delayed," the doctor says. 

Next up is the boy baby. Again I'm asked if the MRI has been discussed with me. I explained what I understood, that the hemangioma may or may not be a hemangioma, that there was fluid on my boy's brain but it seemed benign. The doctor explained that there is a certain amount of white matter in a normal brain. The boy baby, however, has a thinner than normal corpus callosum. Combined with his low muscle tone, which I had been attributing to his respiratory problems, this thinning of the corpus callosum could be indicative of cerebral palsy. I'd desperately feared this. Prayed to whomever, and cried to myself in fear of this. In college, I worked as a personal care attendant for a woman with severe CP. She had very little use of any of her limbs, and was confined to an electric wheel chair. She died in her sleep at the age of 24. My mother had been saying "it's not cp. He's fine" every time she'd catch me crying. I shot her a death look when the doctor said those words."It's not going to be 'okay.'" I said. Tears streaming down my face, I get the boy baby dressed and explain to the doctor why I'm so afraid...she said, "that's not him. If he does have it, it will be far milder than what you've described." She leaves, and I again turn to my mom and say "I TOLD you. I told you there was something wrong." She says nothing. What can she say?

The babies are to go home with my folks, I'm to go to work. I'm in the car...I let loose. Horrible, wracking, terrified sobs. How can I do this? Why is this happening to us? I am NOT strong enough for this. My phone's a friend whose baby also has issues...he's inpatient this week for probes and scopes...."What's going on?" my friend says. "My baby's got cerebral palsy, and now I'm trying to get it together to go to work."   "You just found out? They drop this bomb and now you get to go to work. Are you okay?" he asks. "I will be. I have to be. Why can't we just have normal babies?" "We just have to hope and pray that they're okay, and if they're not, we have to do everything we can to do right by them."  I gulp. I ask after his son. He said they still don't have answers. 

I call the hospital the next day to set up physical therapy....we've been advised that he needs to be seen at least once a week. I'm told there's a really long waiting list. She asks what time of day would work best for us. I say that earlier or later in the day would be better, so I wouldn't have to miss as much work. "Does that work with his nap schedule?" "It can," I say. "A lot of babies do better in the later morning or the earlier afternoon. They're just too tired otherwise." "That's a good point," I say. "I hadn't thought of that. Whenever you think is best then." "You really need to think about what is in the child's best interest, not what's most convenient for you. Your job as his parent is to do what is best for him." I quietly hang up the phone. That BITCH. Now what? I've just hung up on the children's hospital. There's another, better one about 45 minutes away, but I can't do that once a week. I update my facebook status looking for another pediatric physical therapist. The county hospital has a program I never knew about. The county hospital has a terrible never crossed my mind to check there. I give it a shot. We're in for an assessment the next day. I LOVE the therapist. I LOVE the facility. She recommends twice a week, and we set up our appointments for the next month. Mondays at 5:30, Wednesdays at 6. 

Veteran parents, parents of "normal" children say, "treasure these days. soon they'll be running around and you won't be able to catch them."  "Open your 529 now. Saving for college will be easier if you start now." While I recognize you never truly know if your child will walk and play, or if they'll be smart enough for college, you can generally believe that they will do those things. I cannot and will not be sure...for likely years. I can't wait for them to that I know they can. I can't wait for them to grow a little, so I can better predict our future. 

A week later, we have a follow up with neurosurgery. The past week has been sent with googles and tears....I wanted to find the best case mind kept wandering to the worst. The waiting room at the neurosurgeon is packed. I recognize a family from the last time we were there....the baby's head used to be misshapen, now it is not, but there's a giant scar over the top of his head from ear to ear. I kiss my boy's head....thankful it's still perfect, thankful that "at least I'm not her." The receptionist calls me up.....says that the doctor we'd seen before had passed away over the weekend. I'd heard through the hospital grapevine that he'd been ill...we were waiting to see a new doctor. I was sad to learn that this kindly gentleman had died, heart was didn't have room for any more ache. I remember thinking "I should be sadder about this," but I couldn't. We get in to see the new doctor, finally, after what felt like hours. His exam was wonderful...he played with my boy...measured his head....looked into his eyes...checked his reflexes. "He's great," he said. I told him what the other neurologist had said. He said, "what? I'll be right back." He left, he came back. "It's small....but what I look for is a spark. He's got the spark. Some look into their eyes, and that's not there. He's got it. He's going to be fine." 

He is now my favorite of my boy's doctors. I don't know if it's because he's a good doctor or because he gave me good news.

I begin researching corpus callosum disorders. Nothing I find has anything to do with prematurity or with cerebral palsy. They can be caused by infection or damage to the fetus, like fetal alcohol syndrome. I do the math. I didn't drink after I peed on the stick, which was just shy of 4 weeks. The damage to the fetus would have had to be done between the 6th and 12th week of pregnancy.  Did I do my math wrong? I didn't. I know I didn't. I know exactly when I got 33rd birthday. Sometimes the malformations just *happen,* for no reason. WHY? Why the fuck? Why us? How much can I take? Why MY kid?
This is where we are now. They're one year, 3 weeks old, but only 10 months adjusted for prematurity.  I'm sure I missed something. We see 6 doctors regularly, 2 neurologists, our PCP, an opthamologist, ear nose and throat doctor, and a cardiologist. (oh yeah, the cardiologist. so, so minor compared to this other stuff.) We see the physical therapist twice a week. Early Intervention, Help Me Grow, comes out twice a month to do physical therapy, occupational therapy, speech therapy, and assessment for both babies. They're both showing "minor to significant developmental delays in meeting milestones."  Girl baby is babbling, but not in front of strangers. Boy baby is not. She is crawling, he is not. He can't get himself to sitting from lying, though we think he did today. He can sit unassisted. He rolls to get to where he needs to be. She is shy and apprehensive when her routine is disturbed. He loves the adventure. 

I'll be looking into getting a third, tie-breaking neurologist's opinion....not that it matters. All we can do is all we can do. 

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