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 unassisted...in 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 rings...it'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 reputation...it 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 walk...so 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 scenario...my 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, but...my heart was full...it 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 kids...you 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 pregnant...my 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. 

The First One....

I tried to start blogging when the babies were in NICU at the children's hospital...something didn't work right and I gave up. Too much else going on, perhaps? Instance number one where parenting with a partner might have been easier. It's not the way things worked out, so on my own it is. My inspiration now is desperation...a desire to make sure my little man gets all the help he needs.

First, the facts.

My boy has had a series of health problems since he got home from his nine week NICU sentence. He was misdiagnosed with tracheomalacia, a condition that's common in preemies who have been intubated, for what felt like ages but was really only 6 weeks. We landed in PICU on February 4, 2011, and he was diagnosed with a sub-glottic hemangioma, a benign tumor located just below his vocal cords. Our ENT presented me with two options, a "trach," (street for tracheostomy) which he would have until his airway grew big enough to move air, or a beta blocker called propanalol, found serendipitously in 2008 to shrink hemangiomas. I went with option b. My boy was started on the medication and given several breathing treatments, and after 10 days, we were finally home, with the assumption that by the time he was a year old, we'd be through with it all and he would be able to breathe.

Girl baby is at home with my folks.

Post dinner snuggles two weeks later...I look at the boy baby's eyes....then I look again. No, I'm imagining this. I tell my dad, "look at his eyes."
"His pupils are different sizes!" My mind is racing...what is this? I called the 24 hour nurse line, who advised me that with his history and a relatively new medication to head to the ER. By now, after umpteen runs before the hemangioma diagnosis was made, I'm an ER professional. My kid breathes loudly, so we're always moved to the front of the line. We're seen quickly, and quickly released, with a "follow up with your PCP and it's probably a side effect of the medication." Our PCP called us first thing, and referred us to a pediatric opthamologist, who was able to see us the next day. He agreed that it could be a side effect, but recommended MRI confirmation to make sure it wasn't old blood (from his intraventricular hemmorage from birth), tumors, or something else. Since ENT also wanted an MRI, I quickly agree.

Girl baby is at home with my folks.

Fast forward to early March when I noticed he had a bulging fontanel...I hopped on google with my fingers crossed, and said, "oh, at least he's not barfing...." just as a great spray came out of his mouth and nose...off we went back to the ER praying "please don't be meningitis please don't be meningitis please don't be meningitis." I began reciting his history, as I always do on these ER runs, "29 week preemie twin, history of tachypnea, aniscordia, sub-glottic hemangioma, 3 ml daily of propanalol," and came to "bulging soft spot and vomitting" and we were rushed back into an exam room. They took his temperature, no fever, but they explained they would need to do a spinal tap...while I'm generally tough as nails and knew going in that parenting without a partner would be hard, it was time to call in reinforcements. I called my dearest friend who dropped everything (her husband, three kids, and dinner) to come be with me as I watched my 5 month old's back get numbed and covered with iodine in preparation for the tap. Our ER doctor decided to get a head CT before proceeding...this might be scary to an average parent, but we'd been through this once or twice before. She thought that since my boy has the hemangioma in his airway, and also a small one on his back, that there was a possibility he could have them near his brain stem. I suddenly found myself whispering "please let this be meningitis please let this be meningitis please let this be meningitis." The CT came back negative for tumors near his brain stem....and his heel stick (the baby equivalent of a finger prick) came back negative for high white blood cells. Combined with his lack of fever, and the fact that we were due to get an MRI with sedation in the next week, she backed off on the spinal tap and discharged him....we still don't know what happened that night.

Girl baby is at home with my folks.

Friday, March 18, 2011. We arrive at the hospital at 6am, the boy sufficiently starved, prepared for our MRI with sedation ordered by our ENT, opthamologist, and the ER doc who we saw the bulging fontanel night. The boy has been starved and fed a bottle of breast milk. He gets into his sweet tiger gown and we head down to radiology. There, we're greeted by the anesthesologist and a nurse....they explain the study would take about 45 minutes and I would meet him back up in the PACU (post anesthesia care unit) in about an hour and a half. My dad arrives to keep me company, and I hand my boy over to the staff...I'd grown to trust the hospital staff so saying goodbye wasn't terribly hard. My dad and I head up for coffee...discuss my anxieties about the MRI's findings, wipe my tears, and head back down. The anesthesiologist is in the hall and mentions that they've expanded the study, and that it would be about a half hour longer than anticipated. I chat idly with other families in the radiology waiting area..."what are you in for?"....an hour has passed. I stopped a nurse and asked if she could check on my son. She brushes me off with something of a "not my job" air. Another hour ticks by. Another 20 minutes. I hear my baby SCREAMING in the hallway. He's there in the big, industrial hospital crib surrounded by nurses and the anesthesiologist. I reach for him, and am told, "wait, let's get him upstairs." I wasn't about to let him out of my sight, so I stuck right by his side...the staff exchanged glances but I ignored them and held my sweet boy's hand. We rode up to the PACU and was told to wait while they gave report. 10 minutes passed and I was called back. He'd stopped crying. He was sound asleep...."We gave him some morphine to calm him down." "MORPHINE?! to calm him down?! I was right there!" I thought but didn't say...I just picked him and cradled him to my breast. He starts to stir, the nurse says to go ahead and feed him....he's still mostly asleep, but I offer the bottle of breast milk....he takes a suck, snores, sucks again, snores, sucks, snores, then snores again. We move to phase two of recovery....I'm asked "did he eat?" I snark, "yeah, like an ounce. They gave him MORPHINE, so he's asleep." Suddenly we're being discharged. "He's still asleep...should we be taking him home?" "Oh, sure, he's bound to be tired from the anesthesia and the morphine." I wrap him up in my Moby, put him in the car seat, and head home. My mom leaned down to get him from the seat and said, "he's louder! they let him go home like this?" I told her they'd said he'd be louder from irritation from the breathing tube. He continues to sleep in my arms. His breathing gets louder and louder. I undid his onesie and lifted it up. His chest is retracting, far worse than usual. Without putting him back together, he's back in the carseat, back in the car...My dad is driving like a lunatic through driving snow, my hand is on the back of my sweet boy's neck in an attempt to keep what little he has of an airway open....we make the usual 25 minute drive in about 15 despite the snow, I grab the carrier and run into the ER...The line is to the door....the woman at the back of the line looked at my monkey and yelled "this baby can't breathe." We skipped triage and were taken to an exam room immediately. The nurse begins preparing a racemic epinephrine, I argue "it's his throat, not his lungs," she tells me it'll help anyway. Someone yells "bag him" and there's my sweet boy with oxygen, epi, steroids, an IV....He's deemed stable enough to get to PICU, and I sit with him on a stretcher being run through the halls. The PICU staff begins their assessment, the attending is asking questions, he said something about the MRI, I said, "the hemangioma," he said, "it doesn't look like it is a hemangioma. it's an 'ill-defined, soft tissue mass.'" "You're fucking kidding me," I said. Just then the nurses gasp and step back....they've discovered his cloth diaper and look at me wild eyed....I say, "it's a diaper." "oooh." He's stabilized. He's hooked up to a heliox tank...part helium, part oxygen.We begin to settle in. I haven't pumped in nearly 6 hours, my breasts feel like two socks full of rocks, my mind is reeling from the idea that my baby has been taking a relatively un-proven medication for over a month for no reason, I'm furious with the hospital that saved my child's life at birth, and wondering how they almost killed him. I'm offered a breast pump, a toothbrush, a meal, some soap, and some linens. "Try to get some sleep" they say. Dr. ___________ (ENT) will be in in the morning. My dad leaves, and I'm alone to gaze upon the beautiful face I made, with relief that he was still alive, with anger that was even in question, and with tears as I processed the previous 14 hours.  Our ENT came in the next morning, about 6am, and explained how he still felt it was a hemangioma....something about how the abnormality in his airway was vascular in nature...he again mentioned the tracheostomy...and said that if it were his child he would stay the course with the beta blocker. I asked him how an MRI could have caused this to happen....it must have been the breathing tube...irritating an already compromised airway. We spent the next night in the regular patient care rooms, and were home the next day. I was back at work on Monday, where I spent the whole day researching how I could get him seen by another hospital, who was the best pediatric otolaryngolgist in the nation, who I knew near Johns Hopkins, and ripping the hospital a veritable "new one" when they called and said, "we're just calling to see how the MRI went Friday."  Time passes, I calm down, and resign myself to just making sure we don't have that anethesiologist again.

Girl baby is home with my folks.

Our PCP called and said, "did they discuss the results of the MRI with you?" "No, just that it wasn't a hemanigoma/is a hemangioma." "There's fluid on his brain. I'm going to get you into neurosurgery." I left work, shooting an email to my boss explaining why, I can't bear the thought of uttering those words out loud. I knew from other NICU parents that this was no good....brain surgery. shunts. unceratin outcomes. 70 percent survival rates. I sobbed uncontrollably the whole way home. Loud, horrible, wracking sobs. I flew into the driveway and scooped up my boy. Time seemed to stop until it was time for our appointment. 4:30pm the next day. I didn't bathe. I spent that night with him on my chest, admiring the shape of his skull and wondering how there could ever, possibly, be something so gravely wrong with such a beautiful head. We got to neurosurgery...another mom must have sensed somehow how I was feeling. "He's a wonderful doctor. Really. He's kind, and he is good. Look at him!" and pointed to her son, he seemed to a perfectly normal, happy 5 year old. I cried as I whispered "thank you." finally. FINALLY. we were called back to see him. He came back quickly, measured his head and said, "You know, yeah, there's fluid there. But it's still within the normal range...I expect it will solve itself." My family heaved a collective sigh. We all cried. We hugged and kissed the babies and whispered "Thank God"s....though we're not the God thanking type typically. If there is one, he/she/it certainly deserved our praises that day.

This is enough for now. I will write about April tomorrow.