Thursday, December 1, 2011

neurologist schmerologist

Many have been asking about how our NICU follow up went on Monday.
Our appointments were at noon and one, their nap usually happens at 11-1. At 12:45, we were called back for their Bayley Assessments...needless to say, the monkeys were not performing up to snuff.
Monkey A has been crawling for exactly a week at this point and is still a little wobbly. Monkey B is shy and tired and not interested in "talking" to the occupational therapist administering the test. The assessment is standardized so the assessors are not permitted to take the assessees' mother's word for what they can do. So, if they don't see it, it didn't happen. Lame.
Then we wait another half hour to see the doctor, who sticks by her original diagnosis, despite my questions. I do hate her less than the last time...I guess last time I felt like she dropped this giant CEREBRAL PALSY bomb on me and then left the room. This may not have been the case. She explained (I think) that she's referring the corpus callossum and other "white matter" as the same thing and that Monkey's A's thinner white matter can be indicative of cp. Which does not match what I've read, and I've read A LOT. Regardless of whether she's right or not, the treatment at this stage of the game is identical, so we work and wait until January when we see the other specialist.
Monkey A is.....a totally different baby than the one who started physical therapy in June. In June, he could barely roll over, and now he's crawling and almost pulling up. He's babbling like mad, and his fine motor skills are amazing...what bothered me most I think about this visit was that the doctor's lack of acknowledgement of how far he's come. Of COURSE I'd prefer mild CP over the potential cognitive and social difficulties a corpus callossum disorder would indicate, but it's not up to me and the boy is going to be who he's going to be. And the doctors' lack of future telling skills is driving me positively batty.I want answers, and since I can't have them, all I can do is all I can do.

A fellow preemie mom coined the phrase "chokeabitch threshold" to explain how we feel at these visits. We want to take these doctors, nurses, therapists, dieticians, receptionists, we want to take them, and shake them and scream, "MY CHILDREN ARE AMAZING INCREDIBLE MIRACLES!!! WHY CAN'T YOU SEE THAT?!?!?!"

And that is what I leave you with tonight. My children are amazing, incredible miracles.

Thursday, November 24, 2011

On the move...

Deserving of its own post, I simply want to say...Baby A crawled on Monday. Then he did it again. And he's been doing it ever since like he's always known how. And I wept and I cried and I hugged. And that beautiful baby of crawling.

This important milestone has been met before the looming neurologist's visit on this coming Monday. I dread this....this is the doctor who told us that Baby A could have CP, a diagnosis I know reject completely. I'm not sure how to approach this with her, as she is the one who is to make his recommendation for BCMH.  I will need to make it clear to her that I have done a good deal of research and would like her to at least consider my alternative diagnosis.

I had wanted Monkey A to be crawling, and Monkey B to be walking by this visit, if only because this doctor tends to be a bit harsh in her delivery of news (in case you didn't pick up on that...) and I wanted to have these two things in my pocket so I could say to her, "well, sure. They're delayed, but look what they can do." And Monkey A has done it, and Monkey B is ready. Wouldn't it be awesome if she did it there?

Giving Thanks

Today, we spent the day feasting with our large, loud family. The monkeys ate it all up...turkey, stuffing, sweet potatoes, corn, cheerios....the usual Thanksgiving food. What we're really thankful for is the family we've been blessed with. I don't say "blessed," it's not generally part of my vocabulary. But we three have been truly blessed. My mother was raised Catholic and broke from the flock in college, yet her family has kept us close. We disagree on a lot....a lot of politics, a lot of religion. But it truly doesn't matter. We're so fortunate to have a family that easily looks past the very big things we disagree on, and once a year greets our branch of the family tree with arms open wide. We eat, we laugh. What's so beautiful to me this year in particular (we skipped last year...we were less than a month home from NICU) is that despite the conservative-ness of my mother's family, my children and me are still welcomed as though everything were "normal," and that I wasn't going this "alone." (The "alone" is "alone" instead of alone because I'm not actually alone, I'm just without a partner.) They don't care. They love love love love us. And for that I am truly grateful.

Tuesday, November 15, 2011

November is Prematurity Awareness Month

Everyone knows someone who knows someone who's had a tiny baby too early.
Maybe I'm too sensitive. Maybe the thick skin I've developed to deal with doctors who speak in gloomish doomish needs to spread to cover those with a total lack of understanding about what it's like to have a premature baby. Or two.
Examples of things that drive me up a wall:
"They're not walking yet?"
"Just wait until they're walking. You'll want to tear your hair out."
"What a healthy little boy you have! He must be your eater."

What has really been getting to me lately is the comments about how easy it must have been to only be pregnant for seven months, and general complainings about the end of normal pregnancies. Believe me, I understand that being pregnant is miserable for a lot of people, including me, but it's so, so much better than the alternative.
"Oh, honey. You don't even know what the third trimester is like. This is brutal."
"S/he can come out now. I'm done. I'm sure s/he's done cooking by now."
"36/37/38 weeks is fine. I'll see if my doctor can induce me. If s/he won't, bring me the castor oil."

The alternative? Having an underweight baby, one who often can't latch, one who frequently develops asthma.   Worse? Watching your baby(s) hooked up to machines and being denied the ability to hold them, to nurse them, to dress them, commuting to see them, hooking your breasts up to a machine to extract that precious nectar instead of nuzzling their sweet noses to your chest.

Despite what lots of doctors allow, the March of Dimes wants all women to get to at least 39 weeks. Before then, babies' brains and lungs aren't fully developed. If you're reading this and getting mad at me for being preachy, please read this article:

Because my babies were born too soon, I couldn't:
-hold them until they were a day old. I was so lucky in this! Many NICU parents must wait a month or more.
-take them home until they were 9 weeks old.  Again, I was very lucky in this! One friend stayed for nearly 100 days.
-breast feed. I'd always pictured myself as an extended breast feeder. When my milk first came in, there was enough for a small village. However, because I was hooked to a piece of machinery instead of to two tiny, sweet mouths, my supply quickly plummeted to one suitable for almost one baby. I pumped for 9 months, and still feel guilty for stopping. I think I mourn this the most. Where I'd pictured as precious moments with my children, I instead mindlessly watched episodes of Jersey Shore, waiting for my 25 minutes to pass.

My skin needs to get thicker, sure. But for this month, let me mourn the trimester I'll likely never have.

November is Prematurity Awareness Month. On November 17, please wear purple. Better still, make a donation to the March of Dimes or to your local NICU. Even better? Keep your baby in place til it's time to come out.

(Incidentally, Microsoft squiggly lines "prematurity," but not "squiggly." There's clearly more awareness work to be done.)

Saturday, November 12, 2011


Dear Monkey A,
We are writing to let you know the following services have been approved by Blank Blank Health Insurance Company:
18 Physical Therapy Visits.
Your health is important to us. Thank you.
Blank Blank Health Insurance Company

We have a "case manager" who is supposed to help coordinate Baby B's care. Unfortunately, she didn't seem to understand the terms "medical management team" or "essential services per PPACA," so I went it alone and had our physical therapy department file appeals for us until we won.
In the mean time, I'd found a non-profit organization that helps get care for people age 3 and up with developmental disabilities. I shot them an email with the hopes they'd know something. They did. It turns out there's an additional $1200 available through the county for services left uncovered by other means. Of course it turns out we don't need it this year, but that is definitely information I'll be holding onto for next year. A bonus? I passed the information along to a friend whose son needs speech therapy and lacks the insurance to pay for it.

So. We won this round. Go us.

Monday, November 7, 2011

One Year, again

Today, my sweet girl had her one year anniversary of being home. Before we'd left the hospital Saturday afternoon, one of our favorite doctors asked us if we'd like to bust her out the next day. Parenting in the NICU is trumped only by parenting one child at home and one in the NICU, and I was lucky enough to only have to have one day of that horrible task. I made sure both going home outfits were clean and packed. The sweaters and hats my mother had made were ready to go. We arrived Sunday morning, and it seemed like I spent most of the day tracking down nurses and other mothers to say goodbye, that we were finally, finally leaving...exchanging emails and phone numbers and facebook profiles. Paperwork. Dressing them. I buckled them into their car seats. Then finally, finally, walking down the hall with them, one over each arm, one of our favorite nurses escorting us. We were free. We got home, and I lay them both down together in Baby A's bed while I attempted to unpack the previous two months of our lives. It was her turn to get snuggled up.
I lay them both down to sleep in the basinnettes in my room. I got us all up for their 3am feeding and my pumping session. I fed them one by one and thought "okay, we're good." I started pumping, and they started screaming and I again resolved to get them to breast.
They were asleep by the time I was done. I pent that night with a hand on each chest. I stared at their faces and wondered at what I'd gotten myself into.

Saturday, November 5, 2011

One Year

One year ago today, my sweet little boy came home with me. I snuggled him up on the couch, laid down with him and took him to my breast. I bathed him, dressed him in pajamas, and held him close. I spent that night with my hand on his chest, hoping and praying that he would just keep breathing. I may have slept in fifteen minute intervals, but I don't think so. I set my alarm to wake up to feed him his allotted 1.75 ounces of expressed milk....Despite our 9 weeks in the NICU and the myriad of setbacks we'd had, I was still determined that I would get both of these babies to breast, come hell or high water. We'd been through enough, and I would now be the mama I'd always dreamed I'd be....tandem nursing, wearing both at once. I "woke"' the next morning, showered, readied my boy, and the two of us went back to the hospital to visit with my dear girl. Getting out of the house was outrageously difficult....I left a solid 2 hours than I'd planned to. "So what, mama," I told myself, "this takes practice."

Friday, November 4, 2011

Babies and Bubbles

Early Intervention continues for both Monkeys....Speech therapy was out last week and introduced BUBBLES into our lives. Both love them, but Monkey A loses his flipping mind whenever the bottle is produced. He reaches out, he tries to catch them, he blinks when they land in his eyes....He squeals, he claps....they are obvs his new favorite thing.  We have them on all floors of the house so in case of a bubble emergency we are well equipped. The report I received yesterday when I called to check from work...Monkey A army crawled across the floor to get closer to the bubbles, clapped his hands, and said "bobo." (lamenting again at not seeing this myself, but that's a post for another day.)

Monkey B has been fondly christened THE DESTRUCTOR. Anything and everything that is in her path will be destroyed. And eaten. Or kicked, pinched, or smooshed. Internal parenting battle: I keep catching myself telling her she's bad. I'm saying it in an affectionate tone, but I'm certain this isn't something she should be hearing daily. Mischievous? Curious? In need of redirection?

Monkey A is quickly running out of physical therapy visits. We met with BCMH but don't expect to be approved until sometime early next year. While that's great for next year, it's not very useful for this year.  I found out about a Family Support fund available through the county developmental disabilities office, but haven't heard back about that either. The rehab facility is appealing to try and get us more visits. The insurance company has offered us home health to come do it, but I'd rather keep doing what we're doing if we can...he's thriving and doing so well with it, I'd rather not rock that boat. My theory as to why they would offer home health instead of therapy visits is that each policy year, we're afforded a PT/OT bucket and a home health bucket. Having exhausted our PT/OT bucket, they're trying to offer the home health bucket to avoid paperwork or appeals. Or something. I don't care why, really. I just want my boy to get the help he needs. I'll keep plugging away.

Tomorrow, he'll have been home a year. A year. Today they turned 14 months. Incredible. Expect a lengthier reflection on that tomorrow.

Monday, October 24, 2011

leaps and bounds...almost.

Those monkeys of mine...they're taking off, I think.

The girl baby is pulling up like crazy, and cruising along furniture, as long as the furniture is soft. She's saying "Mama," I think for real now, and she laughs like a crazy person whenever I say "no" or "ouch."  She has little curls behind her ears...and wisps in front. It feels weird to look at yourself and say, "wow. She is gorgeous."

The boy baby. Holy cow. Babbling in full effect. He can now get himself from belly to sitting without help....he does however require motivation. He's gotten himself to kneeling. He can (brace yourself) stand if you set him up  holding onto something!!  He even pulled up on my mom's legs today in an effort to dethrone the girl baby from that place of power. His physical therapist is beyond impressed, and pointed out how good his "pincer grasp" is and how well he points....I knew he could point, I just thought it was only at his brain.

One of the research projects on corpus callosum disorders is interested in us!  Interested in that I filled out a questionnaire and they've requested a copy of his MRI. I'll be picking that disk up tomorrow...and while I won't have a clue what I'm looking at, I'll scour it before I send it on, make a few copies, and *then* forward it. The study is in San's a shame they won't fly us out March. It would be a nice break from our Ohio winter.

I had a painfully long and apparently pointless conversation with Baby A's case manager...a person assigned to "help" us "manage his care," a service billed as one that will help me feel less scattered as we flit from one doctor to the next PT/OT visit...but somehow....didn't. I called to see if we needed a referral for a second (third) neurology opinion, and after-not kidding-35 minutes-determined that we didn't need the referral but she said to "give the first neurologist another shot."  I may be overly cynical, but it suddenly seems like our case manager's job is to save the insurance company money.  So, we've got our appointment set with the other pediatric neurologist. I found one that specializes in corpus callosum disorders, so at least I think I've found the right guy.

I've read some more about the different types of disorders, and the more I read, the more wrong the first neurologist's opinion seems. From what I can gather, my boy's got about a 30% chance of being "normal." So I get to sit on this and freak myself out more until our appointment with the third neurologist in January. Yes, January. We do see both the first neurologist and the neurosurgeon during that time frame...

It's the waiting that's killing me. I get so many "treasure this'll be tearing your hair out before you know it"s that I could scream. I get so angry....there's something wrong with my kid's brain, and only time will tell us just how "wrong" that something is. My gut tells me that he's okay. And even if he's not okay, he'll be okay. We'll be okay.

Thursday, October 13, 2011

la La la

The boy monkey is "developmentally delayed...." this is old news. He's not crawling, he's not talking, and he's not been babbling as long as "they" would like. Yesterday, that boy baby of mine got himself from his tummy to sitting. My sister and mother cheered him emphatically, congratulating him on such a stellar achievement. He looked back at them and blinked as if to say, "what's the big deal?"

These babies...they get so many "I love yous" in the course of a day....They are so wildly loved, and they love to hear about it. They always respond to an "I love you," with a quick snuggle, a pause in a tantrum, or just an endearing gaze. Tonight, in response to my "I love you," that boy monkey of mine said back to me "la La la" in a rhythm identical to mine. He loves me back, and wants me to know. -swoon-

Baby B and Me....

A challenge of parenting twins, especially when one's needed much more attention than the other, is a worry that one isn't logging as much mama time as the other. All the nights I've spent in the hospital with the boy baby, all the evenings at physical therapy, the extra time working on muscle strength and reflexes on the floor...the nights I slept with him on my chest when he was first sick...all that time he's in my arms, the girl baby isn't. From the very, very beginning she's been more independent....the day they were born she didn't even need to stop and say hello before being whisked away.  Now that she's crawling, she's growing less and less needy. But I worry that I've bonded more with the boy baby, and that the girl baby and I won't have the kind of strength in our relationship that the boy baby and I have. Tonight, though, she was extra tired, and was offering up a rare snuggle. I took full advantage. We spent time looking into each other's eyes....and I saw my own. No one has ever resembled her mother more than this child resembles hers. We don't need the extra time, the wiggle worm and I, because we already understand each other. It started out that way.

Tuesday, October 11, 2011

can you trip over a milestone?

(author's note: I knew I would be bad at updating's why I've never finished that novel I've been working on...)

The girl baby has been pulling up for about a month here or there, but Saturday it was for real and stuff got real real in a hurry. The little woman has no fear. She pulls up, plops down, stands there showing me a jazz hand and takes off, crawling fastfastfast with her tongue out looking for dog hair or electric things to chew on.  It's wonderful...though she's still behind her actual age of 13 months, she's right on target for 11 months, her adjusted age. (Preemie mom talk....adjusted age=time since due date-time till due date. or something like that. They were due November 18, 2010, and we're about a month out from a year from then. Got it?)

The boy baby-this is huge-started babbling in earnest today. He's been "vocalizing" for a while, though without any discernible consonants or syllables. But there he was lalalalaing and babababaing away...he had to tell me about his day...and what a day it was, apparently. This is big for him because I've learned in my research about corpus callosum  disorders can frequently be autistic....the fact that he's babbling using syllables, assuming he does it tomorrow and the next a good indicator that may be one issue we can start to worry less about.  Mobility wise, although he's still not crawling, or even getting himself to sitting from laying, I think he's close on both fronts. Our physical therapist does too. He's getting stronger daily it seems. It's almost like he's lacking motivation...why crawl when rolling is so efficient?

The way the corpus callosum works is that it is a messaging center between the right and left halves of the's how most people develop good emotional and intellectual intelligence. I hope to learn more about this...he's not eligible for any studies currently being conducted, but I check all the time and am on the mailing list for the NODCC (National Organization for Disorder of the Corpus Callosum.) I keep thinking...maybe she's wrong? Maybe my corpus callosum is thin, too? Maybe their father's is? The rest of us haven't MRIs to look...and I'm curious to know. That's a task for another day.      

The boy's physical therapist told us yesterday that our insurance will only cover twelve more visits through the end of the year. He goes twice a week, so this is obviously only going to get us through another month or so. She suggested talking to BCMH, the Bureau for Children with Medical Handicaps. It works like a supplemental insurance, and if he's qualified and stays qualified, he'll be eligible to stay on it til he's 21. It's through the county, and remarkably I got a call back within an hour! A nurse will be out in a couple of weeks to assess him and determine his eligibility. He'll also be talking to the neurologist who gave him the iffy diagnosis. I cried on the phone with her...I don't want my kid to have a "handicap" and qualify for special programs. I want him to smart and healthy and strong. I want him to be helping his sister destroy the house.

But then I see him and all is well again. He hugs, and squeals with laughter, and is as perfect to me as any child has ever been.

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. 

Wednesday, September 21, 2011

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 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?" 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 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.