I am sitting in our hotel room in McCall tonight with much thankfulness and a full heart. Yesterday morning, K had a doctor visit. I had been increasingly worried about K over the previous 48 hours because she had been sleeping even more than usual and was halfhearted, at best, during meals. I was concerned that perhaps we shouldn't take her to McCall at all, should keep her home in a safe and serene cocoon instead. The doctor encouraged us to go, but to take precautions to avoid the flu as it could still be life threatening for Keira. So when we left for McCall I was prepared to spend all weekend with K in the corner of the hotel room if I had to.
We got here yesterday evening. I was able to keep Keira calm the whole way up (Okay, okay, I held her in my arms while we drove). She began eating consistently again. Then this morning.. This morning! While the boys were still a flurry of wrapping paper and Legos and flying monkeys Keira was taking the stage in Aunt Shelly's arms SMILING and LAUGHING and RESPONDING like she's never done before. It was wonderful, to say the least.
So what's the big deal? Last week we finally met with the occupational therapist (OT) for the first time. She drew our attention to the fact that Keira is quite overwhelmed and overstimulated much of the time. We've assumed contentment because she doesn't fuss BUT the rapid breathing, the hiccups, and the googly eyes, to some extent, are her stress responses. During these times, we learned, she's doing all she can to maintain homeostasis. The more calm we can help her to be, the more she will be freed up to grow and develop.
The OT taught us baby crunches and sit-ups, squeezes, massages, and joint compressions. It was really quite incredible what we noticed over the following two days. Keira startled much less AND when she's calm, she LOOKS at us. Not only that, her eyes are aligned and tracking together. This is encouraging, to say the least.
With this new knowledge, comes more insight as to how K is different from a "normal" baby. She throws up if we try to feed her in the car, gets extra fussy and disregulated if I schlep her around with me for multiple errands, and, as we see now, looses her appetite. So maybe you can see why I was nervous about McCall.
Oh...I just have to tell you... I wanted to take Keira to the studio and introduce her to Annie and Lisa. Lights, kids, noise, new people, I planned for it to be the only outing of the day. And, as most moms understand, the time we ended up going was just before but not quite feeding time, so I was sure I'd have the awkward issue of her being fussy/needing to nurse, etc.
Well. We walked up those stairs and into the studio and Keira was happy. She was calm and alert and breathing regularly. You would have thought we'd just walked into our own house. And when Lisa came to hold her she SMILED. I couldn't believe this and was so touched by the symbolism of it. Lisa remarked that K probably DOES know the place, she was there often enough in utero. Lisa had a heart to heart with Miss K. "We have big plans," she said. "You and me are going to dance." This made my day, my week, my month. My only regret is not snapping a photo.
Merry Christmas, Loved Ones.
P.S. Last weight was 10 lbs 8 ozs. Head growth continues at a good rate. Blood work looks good and her liver panels are normal now.
Saturday, December 22, 2012
Monday, December 10, 2012
For Unto Us a Child Is Born
My brother was recently commissioned to design a Christmas card. He writes:
I don't remember if I mentioned in your hearing that my heart was completely not in this thing when I started out, holding my head with one hand and scribbling carelessly with a pencil in my fist. Of course, I recognized with a wry chuckle that this is how many a work for the Kingdom has been approached. I'm sure there are more than one rabbi who would say that this is a very common, if incorrect, Hebrew attitude. I suppose I just had to have faith and believe what people tend to tell me whenever they see my stuff.
Your Big Brother,
Benjamin Ponsford
I don't remember if I mentioned in your hearing that my heart was completely not in this thing when I started out, holding my head with one hand and scribbling carelessly with a pencil in my fist. Of course, I recognized with a wry chuckle that this is how many a work for the Kingdom has been approached. I'm sure there are more than one rabbi who would say that this is a very common, if incorrect, Hebrew attitude. I suppose I just had to have faith and believe what people tend to tell me whenever they see my stuff.
Your Big Brother,
Benjamin Ponsford
cyberpumpkin.deviantart.com
Sunday, December 9, 2012
Keep on Dancing
This week Keira had a very special visitor. My very first dance teacher and long time family friend, Anita, came to meet Miss K and stayed for a chat. It was bittersweet for me, having Keira meet this very important person in my life, all the while knowing that she may never have the choice to participate in dance in the way that I did. Immediately following Keira's MRI, I remember saying resolutely to Jeff, "I WILL take her to dance class!" Trying to temper my enthusiasm, Jeff reminded me that she may well be in a wheelchair. Well, damper my excitement it did, as anyone who's climbed the steep flight of stairs up to the Kennedy School of Dance studio will understand. People never cease to amaze me, though. Anita told me about a time in her past when she taught special education and had her whole class perform a dance in the school's talent show. Wouldn't you know? Maybe I'll have to talk to Lisa and Annie about getting that ancient elevator in motion.
The story of title of my blog actually starts with Anita. I remember, even as young as 4 or 5, preparing for recitals during dance class on Thursday nights. Mrs. Kennedy would quiz us, "What do you do if you are on stage and the lights go out?" to which the class would shout in unison, "KEEP ON DANCING!" "And what do you do if your shoe comes untied?" "KEEP ON DANCING!" "What if you see your big sister waving at you from the audience?" "KEEP ON DANCING!" and so on.
I don't know if that phrase stuck with all her young students the way it did me, but it became kind of a mantra or slogan for me. When I was still on the fence about starting this blog, I finally told Jeff that I would do it if he would set it up and name it for me. It didn't take him long to come up with the title. And it fits. Not only is dancing something that I love and have been passionate about for most of my life, the idea that we have to just keep going, no matter what, is where we are right now. It might hurt. We might forget what we're doing from time to time. A shoe might fly off. The tempo might be too fast. We just keep going. And hopefully, eventually, we'll fall into rhythm. It'll feel like second nature. Our hearts will soar with enjoyment and gratitude. We'll have created a work of art. Others will applaud. And hopefully not out of obligation or politeness, but because something that we did resonated with them.
I continue to be blessed daily by the supportive comments, texts, visits, hugs, etc of those around me. I know for certain that it was the presence of others that made this week's upsetting news easier to bear. Early in the week, I became more concerned about Keira's eyes. It was quite disconcerting to see her eyes wandering to face in opposite directions (not crossed) from time to time. This was more severe than the lack of eye teaming we'd been noticing for weeks. I called the pediatric eye specialist. He called me back personally and, in sum, said, "What you're seeing is essentially the result of brain damage. There is nothing to be done about it. It won't likely get better."
As is becoming usual, this was hard to hear, though not surprising. But still, as I felt particularly down during the next couple of days, I asked myself why this hit me so hard. I found the answer: Every time we get some "bad" news about Keira and her prognosis, I try to re-imagine her best-case-scenario in terms of her future and her maximum capacity for learning and growing. I feel like every time I get difficult news, I have to bring my expectations down another notch. As silly as it may sound, I told my folks, "I can't picture a fully functioning adult with googley eyes."
Thank goodness that just when I feel discouraged, Keira does something that makes me think I may just be underestimating her. Her little coos and laughs are enough to melt your heart! The way one side of her mouth pulls up just a little higher, looking kind of mischievous like she's saying, "Gotcha!" or "I was just messin' with ya, Mom!"
It's been a little strange that Keira's appointments have been getting to be fewer and farther between just as her delays are becoming more obvious to us. At just about 10 pounds, she can practically pass as a newborn. But at 3 months old, she should be attending to faces, watching things pass across the room, playing with her hands and feet, smiling more, and grasping objects more readily. This is a tall order for our little one. We do see her developing, though, albeit at her own pace. Just this morning she was tracking fairly well, as her brothers sat on the bed with her, waving Transformers in front of her face.
I'm so excited about this week's one appointment. On Wednesday, Jeff, my mom, and I will all meet with the OT in our home for the first time. She is going to assess Keira but most importantly, will give us a zillion (her words) ideas for stretches, exercises, etc. to help with her movement and development. I expect this to be empowering for me, as I often wish I could just DO something for her.
The story of title of my blog actually starts with Anita. I remember, even as young as 4 or 5, preparing for recitals during dance class on Thursday nights. Mrs. Kennedy would quiz us, "What do you do if you are on stage and the lights go out?" to which the class would shout in unison, "KEEP ON DANCING!" "And what do you do if your shoe comes untied?" "KEEP ON DANCING!" "What if you see your big sister waving at you from the audience?" "KEEP ON DANCING!" and so on.
I don't know if that phrase stuck with all her young students the way it did me, but it became kind of a mantra or slogan for me. When I was still on the fence about starting this blog, I finally told Jeff that I would do it if he would set it up and name it for me. It didn't take him long to come up with the title. And it fits. Not only is dancing something that I love and have been passionate about for most of my life, the idea that we have to just keep going, no matter what, is where we are right now. It might hurt. We might forget what we're doing from time to time. A shoe might fly off. The tempo might be too fast. We just keep going. And hopefully, eventually, we'll fall into rhythm. It'll feel like second nature. Our hearts will soar with enjoyment and gratitude. We'll have created a work of art. Others will applaud. And hopefully not out of obligation or politeness, but because something that we did resonated with them.
Photo courtesy Garrison Photography www.garrisonphoto.org |
As is becoming usual, this was hard to hear, though not surprising. But still, as I felt particularly down during the next couple of days, I asked myself why this hit me so hard. I found the answer: Every time we get some "bad" news about Keira and her prognosis, I try to re-imagine her best-case-scenario in terms of her future and her maximum capacity for learning and growing. I feel like every time I get difficult news, I have to bring my expectations down another notch. As silly as it may sound, I told my folks, "I can't picture a fully functioning adult with googley eyes."
Thank goodness that just when I feel discouraged, Keira does something that makes me think I may just be underestimating her. Her little coos and laughs are enough to melt your heart! The way one side of her mouth pulls up just a little higher, looking kind of mischievous like she's saying, "Gotcha!" or "I was just messin' with ya, Mom!"
I'm so excited about this week's one appointment. On Wednesday, Jeff, my mom, and I will all meet with the OT in our home for the first time. She is going to assess Keira but most importantly, will give us a zillion (her words) ideas for stretches, exercises, etc. to help with her movement and development. I expect this to be empowering for me, as I often wish I could just DO something for her.
Friday, November 30, 2012
The Week In Dialogue
Her: Social Security office of Boise. May I help you?
Me: I'm calling to make sure that you'd received all the supplemental evidence I sent for my daughter's appeal.
Her: I have a letter from Dr. R, A letter from Dr. M, an audiology report...
Me: And a couple articles?
Her: Articles?
Me: Yea, scholarly journal articles about the long term outcomes of congenital-
Her: Education? We don't need education.
Me: Umm, yes you do.
Her: No, we don't. I've got two years of med school, Baby. (I'm not kidding)
Me: Well, when you look at her denial letter it does not appear that the person making the decision knew much about CMV.
Her: Oh. Sorry. What did she weigh when she was born?
Me: 4 pounds, 13 ounces
Her: Well, that's too big for her to qualify.
Me: (smoke coming out my ears)
Her: Does she have any functional disabilities?
Me: She's 11 weeks old.
Her: Does she have cerebral palsy?
Me: She's 11 weeks old!!
(I'll spare you the rest)
***************************
At Walmart
Her: Oh, Bekah! Is that you're baby? She's so tiny!
Me: Yes.
Her: She's so tiiiinnneeee! How old is she?
Me: 11 weeks
Her: Wow. What did she weigh when she was born?
Me: 4, 13
Her: Was she a premie?
Me: Nope
Her: She's so tiny.
*****************************
Me: They keep deferring to me and asking me what services I want for her.
Pediatrician: You aren't in a position to be the most objective about it.
Me: They seem to think that she's completely normal right now, so they feel like there isn't anything for them to do until she's older.
Pediatrician: That isn't true. Her eyes aren't tracking bilaterally. She's not responding to social smiles and she is hypertonic. She needs OT and PT.
Thank you!
*****************************
Grama: I kept saying, 'Keira needs me, Keira needs me.' Now I realize that I need Keira and Bekah needs me.'
I love you, Grama Joy. Thank you for organizing my spice cabinet.
*****************************
Me: I start wondering why I have all this help. I feel like I should be doing this on my own, because I'm basically just a mom with three kids.
Jeff: Are you constantly second guessing yourself? Because it seems like you always think you're doing the wrong thing. Keira is not just a third kid. All the medical stuff is exhausting. Think about how much time you spend on the phone alone. Imagine if your mom wasn't there to keep Ronin from crawling on you....
Me: It's crazy all these things I've been learning because of Keira that I've been trying to do for so long. Like when to bag cooking dinner. I'm more able to recognize if I have too much on my plate and I change plans so that I don't get too overwhelmed.
Jeff: I'm proud of you. The way I see it, you've stopped trying to control things you know you can't control.
:)
P.S. Keira weighed in at 9 pounds, 10 ounces today! She's actually on the chart now for her height and weight. Her head circumference, unfortunately, is not on the chart. Keira is somewhat behind in her development so far, it seems, but she is growing at her own pace. She's a wonderful baby and is rewarding us more often with smiles and gazes. Her appetite, cuddliness, and positive hearing test results are all very encouraging signs. Her immune system has also proved to be robust enough to resist several bugs going around our house. Only one appointment next week: Infant/Toddler treatment planning which will hopefully include meeting the OT (occupational therapist).
Me: I'm calling to make sure that you'd received all the supplemental evidence I sent for my daughter's appeal.
Her: I have a letter from Dr. R, A letter from Dr. M, an audiology report...
Me: And a couple articles?
Her: Articles?
Me: Yea, scholarly journal articles about the long term outcomes of congenital-
Her: Education? We don't need education.
Me: Umm, yes you do.
Her: No, we don't. I've got two years of med school, Baby. (I'm not kidding)
Me: Well, when you look at her denial letter it does not appear that the person making the decision knew much about CMV.
Her: Oh. Sorry. What did she weigh when she was born?
Me: 4 pounds, 13 ounces
Her: Well, that's too big for her to qualify.
Me: (smoke coming out my ears)
Her: Does she have any functional disabilities?
Me: She's 11 weeks old.
Her: Does she have cerebral palsy?
Me: She's 11 weeks old!!
(I'll spare you the rest)
***************************
At Walmart
Her: Oh, Bekah! Is that you're baby? She's so tiny!
Me: Yes.
Her: She's so tiiiinnneeee! How old is she?
Me: 11 weeks
Her: Wow. What did she weigh when she was born?
Me: 4, 13
Her: Was she a premie?
Me: Nope
Her: She's so tiny.
*****************************
Me: They keep deferring to me and asking me what services I want for her.
Pediatrician: You aren't in a position to be the most objective about it.
Me: They seem to think that she's completely normal right now, so they feel like there isn't anything for them to do until she's older.
Pediatrician: That isn't true. Her eyes aren't tracking bilaterally. She's not responding to social smiles and she is hypertonic. She needs OT and PT.
Thank you!
*****************************
Grama: I kept saying, 'Keira needs me, Keira needs me.' Now I realize that I need Keira and Bekah needs me.'
I love you, Grama Joy. Thank you for organizing my spice cabinet.
*****************************
Me: I start wondering why I have all this help. I feel like I should be doing this on my own, because I'm basically just a mom with three kids.
Jeff: Are you constantly second guessing yourself? Because it seems like you always think you're doing the wrong thing. Keira is not just a third kid. All the medical stuff is exhausting. Think about how much time you spend on the phone alone. Imagine if your mom wasn't there to keep Ronin from crawling on you....
Me: It's crazy all these things I've been learning because of Keira that I've been trying to do for so long. Like when to bag cooking dinner. I'm more able to recognize if I have too much on my plate and I change plans so that I don't get too overwhelmed.
Jeff: I'm proud of you. The way I see it, you've stopped trying to control things you know you can't control.
:)
P.S. Keira weighed in at 9 pounds, 10 ounces today! She's actually on the chart now for her height and weight. Her head circumference, unfortunately, is not on the chart. Keira is somewhat behind in her development so far, it seems, but she is growing at her own pace. She's a wonderful baby and is rewarding us more often with smiles and gazes. Her appetite, cuddliness, and positive hearing test results are all very encouraging signs. Her immune system has also proved to be robust enough to resist several bugs going around our house. Only one appointment next week: Infant/Toddler treatment planning which will hopefully include meeting the OT (occupational therapist).
Sunday, November 25, 2012
Nursery
Finally, I've taken some picture's of K's beautiful nursery. It's my favorite room in the house. Jeff gave me the liberty of decorating it all without his input and, low and behold...he likes it, too! I started with finding the coordinating larkspur fabrics that I love, then decided to do the walls, poms, and bedspread in bold colors. My mom, of course, did the curtains, blankets, sheets, pillows, and cute stuffed elephant for me. Thank you, Mom! Liam painted the "family portrait" with the neon green background. Ronin painted the small pink square, which is also a family portrait!
Birth Story Part 2
Jeff and I went home. I think we
were fairly quiet. I think I called my parents. I went inside; I guess to pack
a thing or two. I think I got a snack and fed the dog. Then, Jeff drove us to
Boise. I remember that they had advised us not to follow the ambulance; I guess
afraid we’d freak out if the ambulance had to take a detour or anything.
We parked in N4 and walked to the
Family Maternity Center. It was strange again to not have a baby in my arms nor
be conspicuously pregnant. Strange to be walking across the parking lot, as
casual-looking as if we’d come to eat ice cream with a sibling after a
tonsillectomy. We used the phone to get in downstairs, “Keira’s parents.” Took
the elevator up and called to get into the NICU ,“Keira’s parents.” Keira,
Keira, Keira…still so new on my lips and in my head. Is that what we named her?
Was that the right name? We were shown how to scrub our hands and arms before
going into the NICU. It seems that someone actually met us right at the door to
walk us over to Keira. There was no waiting. We walked by the gurney that Keira
had ridden over in. The NICU was one large room, with the capacity of being
sectioned off into 20 or 30 separate “rooms” by sliding curtains.
It surprised me that I actually
recognized her right away. She looked different than the boys. Her features were
more delicate. She looked a bit more like me, in fact. And she was tiny. Lying
there in the “crib,” which may as well have been a giant plastic Tupperware or
turkey roaster. The nurse, Julie, was doing I don’t know what. I looked closely
at Keira without touching. She was sleeping and was so still. She had bands and
wires and all sorts of accouterments. This didn’t seem to worry me, oddly, but
I was alarmed that one teeny foot looked, well, dead. It was blue. Not even
blue… it looked blackish and cold and utterly motionless. I suppose it was from
being squeezed several times already for blood samples. The nurse was very
kind. Matter of fact. No panic. I remember thinking that there must not be anything
too bad happening because everyone was so calm. How could everyone be so calm
if there was something wrong with my baby? At the same time I knew that they
were trained, of course, to remain calm no matter what. It occurred to me how
unnatural that really is.
Someone swept a rocker under me and
closed the curtain around us. I might have held her then. Maybe not. It wasn’t
long before Dr. Borghese introduced herself and the ultrasound began. Jeff
watched the monitor. I stayed seated, away from the monitor, trying, in my
head, to limit the information coming to me, trying to pace myself, not sure if
I was ready for what was coming. The doctor was quiet while the technician
moved the probe around Keira’s tiny head. “Enlarged ventricles, calcifications, cysts,
no active bleeds.” Jeff’s head was nodding. He was seeing what she was talking
about before she even pointed it out. It must have been then that we began to
learn about what CMV could entail. A wide spectrum of outcomes. A wide array of
developmental problems. Familiar words, really. I don’t remember thinking or
feeling or saying much at all. Nobody was concerned that I wasn’t holding her.
Nobody was concerned that I wasn’t nursing her.
Eventually Jeff and I were shown to
a little room with a twin bed- a “singleton” they called it. It was the kind of
room where they go to have sex on Grey’s
Anatomy. Funny what comes to mind
even during such life-altering circumstances. It was about 3am. Dazed, we
curled up together and slept.
Jeff got up very early to go be
with the boys. He got them off to school and told them that their sister was
sick and so was going to have to stay at the hospital for a while. I was alone
at the hospital and went through the prerequisite washing to go see my baby. There
was no crib and no baby where I had left her a few hours ago. There were very
few babies at all. I poked around until I found her in the back corner. I later
learned that this was the coveted “suite.” The corner “room” was somewhat more
private, more spacious, and had nice big windows. Nevertheless, it wasn’t very
welcoming. No chair for a nursing mother. No comforts. Just lots of plugs,
wires, and sterility. The nurse, Julie still, changed my baby’s diaper, found
me a rocker, and let me hold her. Maybe I nursed her. But I held her. Held her
and studied her and rocked her. I nuzzled my face into her downy blonde hair
that was as soft and fluffy as a chick. In my mind, I told her everything would
be ok, though I sensed even then that she was
perfectly “ok,” I just didn’t know if I was. In my arms that morning, it
started to feel real. She started to
feel real. I fell in love with my whole heart in that impossible way that you
love all of your kids with your whole heart. And that made it ok. Soon I had to
put her back in the isolette, as she was having a hard time keeping her
temperature up, but it was better. I couldn’t tell you how I actually was before, maybe disoriented or left
behind or nowhere. Holding her grounded me again, at least temporarily. I loved
this little girl and we had some challenges to tackle.
Julie gave me an orientation to the
NICU, Keira’s care and schedule, visitors, etc, in a way that was patient and
caring and not too overwhelming. She answered all of my questions and waited
for more. And all this with the confidence of a nurse who had tended to a
thousand sick babies but the care and concern as if this were her first and
only one.
I remember talking to Jeff soon
after that. Pleading with him to come back and hold her. “It’s so much better
when you hold her,” I told him. I had to stay away for an hour, which I learned
I would have to do every 7 o ‘clock as the shifts changed. So, I retreated to
the shower, where I cried and cried and cried. I remember looking at my flabby,
empty belly in the mirror. What happened?
This day, too, was a blur. We were
with Keira, yes, but we were limited in how much we could have her out of the
isolette. I met my parents in the waiting room and bravely told them that our
baby had an unknown infection that had affected her brain. I told them that she
looks beautiful and perfect but that her developmental outcomes were likely
going to be poor. They were brave, too, not letting any tears fall, though I
know they were there and they looked so sad, particularly for me, I think.
There seemed to be a parade of
professionals meeting Keira that day: the neonatologist, nurses, various social
workers, lactation consultants, an infections disease specialist, an
occupational therapist, a family support person, the pharmacist etc etc.
Jeff returned. He’d had to stop at
the store for a box of Kleenex because he’d been crying so much in the car. We
went to lunch in the hospital cafeteria. The comfort food I ordered did not do
its job. I laid my head down on the table and sobbed. I told him all of my
terrible thoughts and my raw, naked, reactions.
I’m so scared. I
never wanted to do this. It’s mean of God. It’s a terrible irony. I work with
parents of kids like ours but I always thought, “Thank God it’s not me! I
couldn’t do what they do. I don’t want to do what they do.” What a hypocrite
I’ve been….telling them how to parent
their children. I didn’t want a child who would have to live with me forever or
who I had to worry about after I die. I don’t want my kid to drool or to have
to wear diapers as a teenager or who can’t walk or whose only job option is
McDonald’s. I don’t LIKE any of the mothers I’ve met who parent disabled kids.
They are either old-looking and haggard and worn and depressed or they are Type
A, overly driven, pushy, and rigid. I don’t like them. I don’t want to be them.
Why did we have another baby? Why did we do this? We hmmmed and haaaaed for so
long because we thought, “Why mess with a good thing?” Why did we mess with a good thing?
Look what we did. Would it have been easier if she had just died?? I
talk about acceptance of disabled individuals, but I don’t love them, not
really. I don’t want to hang out with them. They are different and weird. And
then here’s my daughter. I don’t want her to be the weird old lady that
everyone tolerates; who speaks nonsense and has no real friends. I don’t want
this. I don’t want this. I am completely out of control….
Jeff listened. Upset himself, of
course, but still always saying the perfect thing. “Let’s go take a nap.” In
the midst of this terrible loss I was aware of an extreme and wonderful
closeness with Jeff. He was experiencing what I was experiencing and we could
do this together.
We went back to our little room. I
told Jeff this was my Africa. When I was a kid, I was afraid that if I were a
good Christian, God would make me be a missionary in the poorest village in
Africa. Otherwise, you weren’t really the best kind of Christian, right? I
dreaded being sent on such a mission, but finally chalked those thoughts up to
a childhood misunderstanding of what it means to be faithful. Now this. Jeff
held me, assuring me that we could handle this and when I couldn’t, then he
could. He told me the story of the man who was born blind in the Bible: The
disciples asked Jesus, “Who sinned that this man was born blind? The man? His
parents? Jesus answered, “Neither hath his man sinned, nor his parents; but
that the works of God should be made manifest in him.” Spooned together on that
bed I heaved and sobbed until I finally took a little rest.
It was sometime that day that I had
a profound revelation. It’s not even about Keira. It’s about me. This is going to change me. It’s going to change my life. It’s
going to change my theology. Keira is fine. She is exactly what God made her.
Chances are she’ll always be fine with who she is because she won’t know the
difference. The problem here is me. Me accepting her. Me knowing how to love
her and me dealing with the assumptions, expectations, beliefs, etc etc of
other people.
And then I began to transform. As I
sat by myself with Keira that afternoon. I texted. I texted and texted and
texted and texted. I had never really appreciated texting- or my iPhone- until
now. I told anyone and everyone who showed an interest what was going on with
my little girl. I told them everything. There was a voice in me that told me
that this was a private matter, maybe even shameful, but a bigger part of me
wanted everyone to know. It was as if they would show me how to cope or at
least let me borrow some strength. This was so unlike me, I felt. I’ve always
been a person to deal with sadness privately. I do it myself. I draw the
blankets over my head and come out when I feel like I know how to conquer the
trail ahead. But not this time. It was like God was showing me that a wholly
different experience was going to call for a wholly different solution. I would
tell everyone. And in it was a plea. A
desperate one. Help me. And love her. Please, please love her.
I spent the second night of Keira’s
life in the singleton by myself. It was one of the loneliest feelings I’ve ever
had. Lying alone in that bed, I felt so empty. Not only was Jeff not there, but
there was no baby to keep me company. My body had been relieved of its burden,
but couldn’t relax without the presence of what it had created. Finally, I put
a pillow between my knees, in such a way that I had only ever done when I was
pregnant with Keira. And in that way, I think I tricked my body. I slept.
I woke up at 3am and joined Keira
in the NICU to give her her first bath. That’s right. She had not been bathed
since her birth because of the concern for her temperature. The nurse showed me
how to tend to her all the while keeping her as warm as possible. I dare say
Keira liked that first bath. I appreciated the nurses’ consideration. They
always made sure to ask us whether we wanted to participate in these firsts
which, although taking place in the hospital, are milestones just the same.
What I found the next day was a
sense of amazement at how far we had come in just 48 hours. Our tears, for the
time being, had largely dried up. I felt like this was something I could do. I
would make sure that our little girl was an integral part of the community,
regardless of her abilities or needs. I would figure out how to be the best
mother I could be for her. I would make it public. I would let others in on my
struggles and accomplishments. I would reach out to others when I was weak. As
Kelle Hampton, author of Bloom, puts
it, I would borrow their hearts when mine was broken. I would not hide from the community in shame
or fear that they would reject my little girl. I would pave a new way to be the
mom of a disabled child. I would be the model of a whole, healthy, happy woman
whose third child just so happened to have some struggles. This would not “ruin”
my life as I knew it.
Jeff was downright excited about
the future. (Okay, I admit, it was a bit hard to take sometimes.) He felt that
he had discovered the best reason why his professional focus had shifted in the
past couple of years. He had taken part in the LEND program and become much
more invested in the disabled community, a passion that had fully prepared him
for this new role. He started dreaming about becoming an advocate, not just for
our child, but for disabled individuals in the community, perhaps even becoming
politically involved.
Our involvement in NNH transformed
from a sick joke into a pure blessing. You name the type of therapy Keira might
need and we have a friend and colleague who specializes in it. Or, if we don’t
then we have a friend who “knows a guy.” Really, this is an immense source of
comfort and security. We are lucky to have these resources at our disposal in a
way that others in the same position may not. Plus, our colleagues really “get”
it. They understand the implications of Keira’s condition. When they ask how
she’s doing and we say, “She’s doing well,” they know that means that today she’s doing as well as she can
possibly do, but that does not mean that we aren’t scared as hell about what’s
around the corner. In this way, our friends at NNH are some of our best
supporters.
During the first day, I was fully
expecting to be annoyed by the insensitivity and gall of anything anyone tried
to speak to me about the situation we were in. Thankfully what I found instead
was that virtually everyone I spoke to seemed to be completely well intended if
not helpful and heartfelt. It’s true what they say. When you look at others in
crisis and see how their lives change and how they handle it, you gawk and
think, “I could never do it.” But you do. You just do. And now, I will never
forget that the reason I am able to do it is because of the immense strength I
am able to draw from the love of friends and family and even the kindness of
strangers.
Wednesday, November 21, 2012
Welcome
Today was a beautiful day. For whatever reason, it felt like a "normal baby" day. What I mean by that is just that I had some pretty great chunks of time in which I was just with Keira and enjoying Keira. The timer wasn't going off in my brain every minute that says, "She has CMV. She has CMV."
Ronin and I laid on the floor with Keira this morning and took some lovely pictures.
Next was our 3 hour appointment with the audiologist. And the results were...good news! All things considered, her hearing looks normal. If you've been wondering how they test a baby's hearing, here you go:
Next hearing test: 2 months.
Yesterday was K's global developmental assessment by the Infant/Toddler program. Again, all things considered, she looks normal, at least for now. The good news is that the program still seems to be willing to send therapists in for Keira if we want them.
Jeff and I are interested in having her assessed by an occupational therapist (OT) and/or physical therapist (PT) right away. We suspect that she has some hypertonia. This is a problem where the muscles are overly tight or rigid, making it difficult for the muscles to relax and contract normally to allow everyday activity. This is common in CMV babies and can eventually make it hard to eat, walk, etc. Jeff and I have noticed that it's difficult to get her dressed because she doesn't want to relax her arms and legs. It's not too concerning at this point, but the sooner problems are addressed, the better the outcomes.
Finally, my brother came home today. Yay. He got to meet Keira. He needs a little TLC right now and what's better than holding a sleeping baby?
Happy Thanksgiving to all of you.
Ronin and I laid on the floor with Keira this morning and took some lovely pictures.
Next was our 3 hour appointment with the audiologist. And the results were...good news! All things considered, her hearing looks normal. If you've been wondering how they test a baby's hearing, here you go:
Next hearing test: 2 months.
First smiles! |
Jeff and I are interested in having her assessed by an occupational therapist (OT) and/or physical therapist (PT) right away. We suspect that she has some hypertonia. This is a problem where the muscles are overly tight or rigid, making it difficult for the muscles to relax and contract normally to allow everyday activity. This is common in CMV babies and can eventually make it hard to eat, walk, etc. Jeff and I have noticed that it's difficult to get her dressed because she doesn't want to relax her arms and legs. It's not too concerning at this point, but the sooner problems are addressed, the better the outcomes.
Happy Thanksgiving to all of you.
Sunday, November 18, 2012
Birth Story
On Saturday evening, Jeff and I
dropped the boys off at Aunt Steph’s and headed to Boise to have a sushi
dinner. I wasn’t feeling great—just really uncomfortable. I’d had a feeling the
baby might come a little early, which was strange since she (and consequently
I) seemed so much smaller than with either of the boys. However, my pregnancy
had gone so smoothly that I had no reason to think that birthing Keira at 37
weeks would be a big deal. In fact, her brother Ronin, was born at about 37 ½
weeks. My pregnancy had been “boringly healthy” according to my OB. So, when we
sat down at Shige and I began having regular contractions, I was fairly excited
and Jeff said, “Ok, fine, you can come tonight.” The contractions didn’t really
hurt, but were so regular that I had Jeff start timing them. They were actually
5 minutes apart and we joked about whether we’d get a free meal if my water
broke in the restaurant. We decided that if my contractions continued, we could
go to a hospital there in Boise, thus evading my OB.
My doctor had been fine, but not my
favorite doctor ever. I had wondered whether he was dishonest with me about
local birthing facilities. He had an ultrasound machine in his office, which he
used many times with us, always seeming mostly interested in getting a great
portrait of K in utero. We had wondered whether he cut corners a bit. However,
we stuck with him and weren’t really concerned. Why would we be? My first two
pregnancies and deliveries had gone wonderfully and I had no reason to believe
my third would be any different. This OB also made us laugh. He reminded us of
Joey from Friends. He looked Italian,
had big muscles, and usually wore tight jeans and a muscle shirt to our
appointments. To top it off, he drove a little white Porsche to work and parked
it conspicuously for others to admire. We laughed and called him Dr. Drake
Ramoray behind his back.
So anyway, we finished up dinner,
but on the drive back to Nampa the contractions waned so we picked up the boys and went home. Before bed, I had Jeff snap a quick picture of my pregnant belly- thinking I better not push my luck any longer and just have him take one before it was too late. I had a good night’s sleep. In the morning, similar contractions
started up again. I took a shower, told the kids to pack for a day with Grandma
Janie, rather than getting ready for church, but then the contractions ceased.
Feeling exhausted, I went back to
bed. I remember feeling so conflicted. On Monday, I was to have two feedback
appointments at the office and needed to get those reports written. I slept
until about 3 o’clock, waking briefly every once in a while because of a
contraction, then going back to sleep. When I woke I laid in bed, texting
Anneke about the frustrating false alarms. Anneke was quite jealous, because
she was due three weeks later than I was and wished her due date was yesterday.
When I got up, the contractions seemed more regular again, this time about 7
minutes apart. They still weren’t bothering me much, but the regularity was
concerning, so I told Jeff we probably should go to the hospital.
We got the boys geared up again and
I wrote an email to Cathi and Heather, letting them know what to do should my
maternity absence be starting early. While writing, I wondered whether I was
making too big a deal of these contractions and would get the office staff
worked up over nothing. But, then I went to gather my last things from my room
and on my way back up the stairs I had to pause with the force of a
contraction. “Yep,” I said, “Let’s go to the hospital.” It was 4:20.
We dropped the boys off at Grandma
Janie’s and took the short drive to the hospital. We walked upstairs and
checked in. The maternity ward was very quite. We were introduced to Katie, our
nurse for the night. She was a tall, blonde woman who resembled Heidi Klum, I
thought. I changed into a gown and hopped up on the hospital bed so that Katie
could strap me to the monitor and ask me intake questions. Jeff was kidding
around, texting friends, and remarking about his super shoes, which he had worn
for his wedding and the birth of each child. I was texting Anneke again, as she
seemed to be cheering me on.
We talked with Katie. She almost
immediately asked if I might want Pitocin to speed up my labor, which surprised
me so much. “I don’t think that will be necessary,” I said. I remember her
telling me about her 4 children and her remarks about being way more
susceptible to skin cancer if you’d been in a tanning bed even once. I asked
her, “So does the monitor look like a woman in labor?” She laughed. “It looks
like a woman who is handling labor very well,” she said. “Oh good,” I said, “because
part of me still feels like I should be at home writing reports for tomorrow.”
She laughed, assuring me that I wasn’t going to be at work tomorrow. She asked
about a birthing plan, which was ironic cause it was the first time I didn’t
have one but also the first time anyone in a delivery room had ever asked me
about one. I told her my plan was just to go as natural as possible. I told her
I’d found that a plan wasn’t much needed because my labors were so short. She
assured me that the doctor had been paged already but in the worst-case
scenario she was a pretty good baby catcher. “Really? You’d let me deliver even
if he wasn’t here?” “Of course,” she said, and I was immediately relieved.
I was at the point where the
contractions were indeed feeling regular and uncomfortable. It occurred to me
that I was hungry. My stomach growled so loudly that Jeff and Katie both heard
it. Katie surprised me again, saying that I could eat. She offered to bring me
a sandwich and said Jeff could go out quick and bring back a “big juicy
burger.” As good as that sounded, I said “Don’t go,” and Katie brought me a
turkey sandwich.
Katie judged that I was at 4 cm. “Oh
yea, she’s right down there. How cute,” she said, “I touched her head and she
floated away.” The contractions were more painful now and only 2 to 3 minutes
apart. I think this is when I told Jeff to stop making me laugh, lose his
phone, and have his hand readily available for me. Katie had me turn on my side
because she wasn’t getting a great oxygen rating on the baby. Right after I
turned, I felt a pop and there was a hot gush of liquid. I remember saying, “Now
I’m scared I’m scared I’m scared.” That sandwich wasn’t going to get eaten.
Katie, of course remaining calm,
checked me again—7 cm. She informed us that the fluid was greenish, which meant
meconium in the fluid. She gave us the heads up that this was probably no big
deal, but might necessitate an extra day’s hospital stay. Katie was ready to
move me to my room. At this point, I really didn’t want to go anywhere. After
my previous deliveries, I was scared that baby would drop right out onto the
floor in the hallway, or that I would lose control and not be able to walk. She
asked if I wanted to walk or take a wheelchair. Still trying to be tough, I
said I’d walk. But just then another whopper hit and I changed my mind. Katie was scurrying a bit, having the doctor paged
again, getting me a wheelchair, and whatever else they do to get ready. I
warned her it was going to be quick now.
I was scared. The contractions were
hard. The doctor wasn’t there. I could barely handle the bump of the chair over
the threshold of the door. Then they wanted me to stand up and get into the
bed. Ahh! And here came the part when I knew without a doubt that this baby was
coming. Gosh. It seemed to go from 0 to 100 in 60 seconds. I was in pain, but
more than that I was scared. In fact, I kept saying that over and over. I
climbed into the bed with Jeff’s help, but couldn’t even make myself
comfortable because the contractions were so hard. I caught Katie bolting out
the door to go get something or someone and I yelled, “Don’t go! She’s coming!”
Bless her heart, she came back immediately and taking one glance under my gown
said, “Oh my gosh, you aren’t kidding. Fully dilated and effaced, Katie could
see the head. I was writhing in pain now, finding no relief. I was telling Jeff,
“I just want to pass out. I just want to pass out,” and he was encouraging me
to breath and keep my eyes open.
My body started to push then- it
was no decision of mine. The bed was still fully made, but Katie was at the
other end. “I can’t help it. I can’t help it,” I said. Katie assured me it was
all right; I could go ahead and push. So I did- hard- and with a shloop shloop
shloop---she was out. It was 5:22.
“Oh thank God it’s over thank God
it’s over thank God it’s over,” I kept saying in huge relief, and I suppose,
trying to sooth myself. The pace of that labor was terrifying. I don’t remember
seeing much. Even though my eyes were open, I think my brain was too
preoccupied to register much. But- I did see my tiny baby girl, purplish
looking, get whisked away to the far side of the room. One other person had
come into the room- a “baby nurse” Katie called her and she set to work on Keira.
I wasn’t concerned about her, just trying to catch my bearings, still repeating
my mantra over and over. However, in the next seconds or minutes, I realized
that Keira wasn’t crying. They said, “4 lbs. 13 oz.” “Whoa, that’s small,” I
said, though not concerned, as I would have/should have been if I were in my
normal state of mind in that moment. They said she was having a hard time
keeping her temperature up and there was “something else…,” Katie said vaguely.
Jeff filled in…”She had a nucal cord?” I saw Katie nod her head yes.
I was still laying there, legs spread. No doctor. Katie was now talking about paging a different doctor. Apparently she wanted a doctor to deliver the placenta. Katie put the bed into birthing mode now, which seemed kind of silly at this point, but allowed me to rest my legs in the stirrups. I was vaguely uncomfortable laying there in all my glory for what was, I don’t know, maybe 20 minutes, but during that time I laid back and listened to what was going on with Keira. She finally cried. A little mewing sound like a cat. Jeff took pictures and brought them over to me. I could see her tiny features from where I was laying. So precious. Katie and the other nurse both were busy with her, but she calmly told me that Keira was just having a little bit of a hard time because she was small and that they’d probably take her into the nursery so they could keep her warm. It was strange that Jeff and I had not held her at all yet. There was no talk of trying to get her to nurse.
Finally, my OB came in. He was all
sweaty in bike shorts and a t-shirt. “I go out for one little bike ride…” he
said. “I told you they were fast,” I couldn’t help saying. I got nervous again
as he fixed to deliver the placenta. At the doctor’s direction, I pushed a
couple of times and this mini birth was over too. He said I looked fine save
for a couple of “skid marks.” My legs had grown so tired and I was craving
being able to just lay on the full bed with some warm covers. It seemed that
just as quickly as the doctor had come in, he was gone again, saying very
little, but that he’d see me later. Whatever. I was a little annoyed at him,
but put it out of my head.
When the doctor left, they were
still messing with Keira. I asked if I could hold her before they took her to
the nursery. They granted me this, going out of their way to roll my bed closer
to her so I could hold her without disrupting her various attachments. She must have had monitors on for her oxygen,
pulse, etc. I finally held her. Sweet, tiny Keira. She looked perfect; just
tiny, like a doll. I breather her in and had no concerns. Everything would be
just fine. I wanted to try to nurse her, but the nurses seemed to want to get
her to the nursery and I trusted them to know what was best.
During the couple of minutes that I
was holding her, Jeff shot a picture to send off to friends. Looking back at
that picture, I laugh. It was kind of a fluke. For one, I look damn good which
couldn’t have been true because I felt a mess. Secondly, I was cuddling my
baby, which is something we didn’t really get to do that first day or two, at
least not the way parents typically do. I soon gave her back and they wheeled
her out of the room and me back to my proper place. It was suddenly very
lonely.
The sequence of the next events are
blurred in my memory. Someone gave me a
shot of something or other to help my uterus continue to contract. The
injection was in my thigh and Jeff laughed at me for complaining that it hurt.
It’s all relative, I guess. Alone in my hospital room, I turned to my phone. I
texted several friends about Baby’s arrival. I called my parents. They wanted
to know everything and I told them, “Just come,” which they did. Jeff felt torn
between the baby and me, mostly choosing to stay in the nursery so that he
could stay informed as to what the nurses and doctors were doing. I didn’t like
being alone in that room, but he wanted to be with her. Finally, I went to see
her in the nursery. I wasn’t sure whether I was “allowed,” having just given
birth, to get up and walk down the hall on my own. But, since nobody was there,
I did. I was welcomed into the nursery and when I asked if I could try to nurse
her, they turned a rocker toward the corner, away from the work stations of the
other nurses. My parents came. Then they came again with food for me. There was
some concern, we were told, with Keira’s initial blood work. The platelet count
was very low, so they were testing it again. Janie came with the boys. That was
stressful. At that point, we didn’t know exactly what was going on with Keira
and I was trying to stay positive. The boys were excited but could only see Keira
through the glass. Janie was concerned about getting some preemie clothes
purchased for our unexpectedly tiny girl. Jeff and I met with Tom Patterson, a
wonderful pediatrician who, as it turns out, goes to our church. He asked
questions about my pregnancy, my health, and prenatal ultrasound findings. He
told us that they were trying to figure out why Keira was born so small and why
her head circumference was small, even for her size. He had noticed little dots
on her skin and along with other symptoms, he was concerned that she may have a
TORCH infection. However, given that I’d had a cold last weekend, chances were
good that Keira had gotten that and so they started her on antibiotics right
away. Dave came separately, later. The second platelet count was up a bit, but
not much. A head ultrasound would be needed to help diagnose what was going on.
Finally, I lay down to try and rest. No sooner than I’d closed my eyes, the
phone rang. It was my OB. He said that he was going to discharge me so that we
could follow Keira, in an ambulance, to the NICU in Boise where there was a
tech who was certified to do head ultrasounds was located. Dr. Patterson came
back. He’d been running all over the hospital and spent lots of time on the
phone trying to do what was best for Keira. He kept talking about her
“precipitous” birth. He’d talked to Dr. Borghese at the NICU, who was concerned
about Cytomegalo Virus or CMV. If, in fact, we were to find that Keira had
this, she’d be hospitalized for 6 weeks for treatment. Ok. Still, this wasn’t
registering as overly concerning for Jeff or me . Just an infection to be
cleared up. Jeff and Patterson talked shop for awhile. The pediatrician’s concern
for Keira was comforting. He was relying on God and praying.
So here it was, just 5 hours after
her birth, I was being discharged from the hospital. But I wasn’t really taking it all in; not
really. I could still barely wrap my head around the fact that I’d given
birth….and so dramatically (like a rocket launched from my___), let alone
grasped the thought of my baby being only 4 pounds. Oh man. Well, ok. She has
to go to the nursery? Oh man. Well, ok. Blood problem? Oh man. Well, ok. And on
and on and on.
The weird thing was, once I’d put
on my not-normal-but-not-maternity jeans, I realized I didn’t even feel like
I’d had a baby. Not particularly achy or uncomfortable. No feeling like if I
stood too long, my guts might drop onto the floor (as I described it to my
husband after the boys). All the better, I suppose, for being discharge and
having to run off to Boise; but, it just added to this strange, disoriented
feeling I had. I asked Katie for a big hug and thanked her for all of her care
and concern. She promised she’d be praying for us. Other staff members chimed
in, “I’m sure it’ll be fine.” “Just a precaution.” And with that I was swept
out of there. No wheelchair for me. No baby.
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