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.
Monday, November 7, 2011
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.
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 Francisco...it's a shame they won't fly us out there...say...in 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 time...you'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.
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 Francisco...it's a shame they won't fly us out there...say...in 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 time...you'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 regularly...it'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 day....is 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 brain....it'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.
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 day....is 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 brain....it'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.
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