Desmond has learned a new trick. It's a Paguirigan classic called coco bump wherein I say, "coco bump" and Desmond responds by touching his forehead to mine. We like to do it no less than 10 times per session and it generally ends with giggles and squeezes. His new grin is nothing less than amazing and shows off his two teeth and his ability to scrunch his almond eyes.
It's all Christmas up in the joint complete with an Advent Calendar and loads of candy lying around the house. I have mixed feelings when I fill Mahalia's head with lies about Santa and how he's watching her, etc. In keeping with another Paguirigan tradition, I told her that if she put her shoes out on the eve of December 6 that she would wake to find them stuffed with candy. She was terrified by the fact that St. Nick would be sneaking into the house and pleaded with Shane to tell St. Nick that we had plenty of candy in the house and he need not sneak into our home. Conveniently, St. Nick left a note to Mahalia asking her to not be scared and that she deserved the candy coming to her. More lies!! For the time being, though, it is a convenient bribe for our little lady who lately prefers to push the envelope with her weary mom and pop.
It was 60 degrees on Tuesday, 40 on Wednesday and is supposed to be 30 degrees tomorrow. I am flustered by the blustery weather and consuming too much coffee to ward off the chill.
I am astounded by how quickly the days pass and am looking forward to having some time off, spending my days in soft pants snacking on salty then sweet then salty, etc.
Thursday, December 10, 2009
Sunday, November 15, 2009
Sunday, November 8, 2009
This Train
Desmond has two teeth and has learned how to clap. He applauds when I walk into the room and cries when I leave. He eats like a mack truck and Shane and I think about when we have two teenagers eating us out of house and home.
We took him to the surgeon a few weeks ago for a check up. A chest x-ray revealed that his patch seems to be a little loose on one side although the stitches and staples have not moved since his last chest x-ray. A week after surgery Desmond's breathing accelerated and the Dr.s worried that his patch had de-hissed or popped open on one side. A chest x-ray was inconclusive and so there was a dye procedure that proved that it was holding tight. And so we are reminded that our little bionic boy does indeed have a piece of gortex inside of him.
This morning Shane let me sleep in. 8:00 AM feels like the 11:00 AM of my twenties. What did I do with my time and my money before I had children?
A 20 something year old woman passed out on the train tracks right in front of Shane. The lights of an incoming train were visible and people started screaming. As the woman lay sprawled across the tracks and the train got closer and closer, Shane thought about his two kids and knew that he needed to go home--he would not jump onto the tracks to get her. Astonishingly, the screaming woke the woman up and she jumped up and reached into the air. Shane was able to grab her arm and he said he pulled as hard as he could to get her onto the platform. They sat together on the bench. He said that she was really out of it and that wanted to vomit. He never even learned her name.
Forget about underlying health issues. Forget about a patch. We all sort of live so close to the edge at all times. Bam.
We took him to the surgeon a few weeks ago for a check up. A chest x-ray revealed that his patch seems to be a little loose on one side although the stitches and staples have not moved since his last chest x-ray. A week after surgery Desmond's breathing accelerated and the Dr.s worried that his patch had de-hissed or popped open on one side. A chest x-ray was inconclusive and so there was a dye procedure that proved that it was holding tight. And so we are reminded that our little bionic boy does indeed have a piece of gortex inside of him.
This morning Shane let me sleep in. 8:00 AM feels like the 11:00 AM of my twenties. What did I do with my time and my money before I had children?
A 20 something year old woman passed out on the train tracks right in front of Shane. The lights of an incoming train were visible and people started screaming. As the woman lay sprawled across the tracks and the train got closer and closer, Shane thought about his two kids and knew that he needed to go home--he would not jump onto the tracks to get her. Astonishingly, the screaming woke the woman up and she jumped up and reached into the air. Shane was able to grab her arm and he said he pulled as hard as he could to get her onto the platform. They sat together on the bench. He said that she was really out of it and that wanted to vomit. He never even learned her name.
Forget about underlying health issues. Forget about a patch. We all sort of live so close to the edge at all times. Bam.
Monday, September 14, 2009
Autumn In New York
I cannot wrap my head around the movement of time. Desmond, who turned 6 months old last Wednesday, is hiking his tuchus in the air as if to crawl. I will blink my eyes and I will have children in their twenties.
My days are full. My days are rich.
I have returned to work and am remembering how much I enjoy being around children. My classroom is bright and airy. The tinkling of the piano and the sound of teeny tiny bare feet padding on the floor make my heart feel happy.
While Shane was putting Mahalia to sleep last night, she put her hand on her chest and said, "When you love someone it feels like your body loves them." My girl will love intensely and hurt intensely. She stands on the toilet and admires herself in the mirror while I floss my teeth, "I am so pretty." She is. She is drop dead gorgeous. "Your hair is brown and straight. My hair is blond and curly."
When I hold Desmond, he pats my back with his right hand and plays with my hair with his left hand.
Returning to work was easier this time around. I sat in a meeting, doodling in my notebook thinking to myself, "this is not work. this is like a break for me." I was excited to see my colleagues and friends. It means much to me, being there without the weight of worry. I spent so much of my time last year with my head in the clouds, worrying about birth defects. I am not pregnant. I might not ever be pregnant again. How is it that this chapter of my life has already come to a close?
(I secretly worry that I will never be able to appreciate life as deeply as I would like. The days move too quickly and not a profound thought has been thunk. It's all I can do to get to work and make sure my kids get fed.)
I have been deeply affected by the sharp decline of a sick friend and my mom reminds me that with age, life gets "heavier and heavier." Autumn, for all of it's beauty, is somehow the most painful season change and for me carries with it the most visceral nostalgia.
I cannot stop listening to this song.
My days are full. My days are rich.
I have returned to work and am remembering how much I enjoy being around children. My classroom is bright and airy. The tinkling of the piano and the sound of teeny tiny bare feet padding on the floor make my heart feel happy.
While Shane was putting Mahalia to sleep last night, she put her hand on her chest and said, "When you love someone it feels like your body loves them." My girl will love intensely and hurt intensely. She stands on the toilet and admires herself in the mirror while I floss my teeth, "I am so pretty." She is. She is drop dead gorgeous. "Your hair is brown and straight. My hair is blond and curly."
When I hold Desmond, he pats my back with his right hand and plays with my hair with his left hand.
Returning to work was easier this time around. I sat in a meeting, doodling in my notebook thinking to myself, "this is not work. this is like a break for me." I was excited to see my colleagues and friends. It means much to me, being there without the weight of worry. I spent so much of my time last year with my head in the clouds, worrying about birth defects. I am not pregnant. I might not ever be pregnant again. How is it that this chapter of my life has already come to a close?
(I secretly worry that I will never be able to appreciate life as deeply as I would like. The days move too quickly and not a profound thought has been thunk. It's all I can do to get to work and make sure my kids get fed.)
I have been deeply affected by the sharp decline of a sick friend and my mom reminds me that with age, life gets "heavier and heavier." Autumn, for all of it's beauty, is somehow the most painful season change and for me carries with it the most visceral nostalgia.
I cannot stop listening to this song.
Thursday, July 30, 2009
Monday, July 27, 2009
Returning Home
We've been away for three weeks.
We went to Ohio, land of flat, wide open spaces, fried foods and dirty church festivals. We enjoyed the company of sassy cousins and wise aunts and uncles and Nana and Tata. I have been told that it is common for babies to make developmental leaps while away from home. This has certainly been the case with Desmond who, for the most part went to Ohio as a sweet and alert lump and came back to Brooklyn still sweet and alert but with hands that can grab objects of desire and place such objects into his mouth.
On our ride back both children were fantastic in the car, sleeping much of the first leg to Pittsburgh where we saw our 95-year old Great Grandma Sophia looking tan and happy in her new digs. The good behavior continued for the second leg of the long car ride and we were all happy to see the NY City skyline as we rounded the bend in Jersey.
It's always a mixed bag returning home; we are all excited to be in familiar surroundings but it always makes me edgy--i try to leave the home in a respectable state but the old messes remain. There is the unfinished CD re-organization project, the boxes of books that need to go, the bags of clothes to be donated, etc.
Upon entering the door, we were greeted by a foul odor and while Shane unloaded the car I did some investigating. I opened the fridge and seriously almost vomited when I smelled its contents. No sooner had I smelled the rot than I thought of the gallons of breast milk that lay behind the freezer door. It too had gone bad.
Shane and I wrapped dish towels around our faces and emptied out the fridge's contents and bleached its inside out. While I was sad to lose all that breast milk, it was strangely liberating letting it all go. While D was in the hospital, the pumping felt like all I could really do for him and although I moaned and groaned about it in the process, the process itself helped keep me grounded in a way. And throwing out that milk was having one less reminder of our hospital journey.
At Dezi's four month appointment, he received four immunizations. He had a bit of a cough and I anxiously asked his Dr. if I needed to be weary of him developing a cold. His pediatrician is a wonderful woman with a lovely and memorable speaking voice. She smiled and said, "From now on we're going to think of Desmond as a normal baby with reflux." An unremarkable statement that meant the world to me. He did get a cold with a bad cough (luckily for me, we were in the home of my super supportive and comforting Dr. daddy, aka Tata) and he recovered easily. And with that, I was able to let go of more fears.
He is growing quickly. He is meeting his milestones on time and is active and curious. The tissue should be growing around his patch as his body grows. Before his birth, I happened upon the blog of a little girl named Ava Helmick. She was also born with a diaphragmatic hernia that was repaired with a patch. She remained a healthy child until just before two when her patch de-hissed and has been in and out of the hospital ever since. Although, comparing Ava to Desmond is like comparing apples to oranges I can no longer read her blog because it sends me reeling. Perhaps if you have a moment, you can read it and send good thoughts to this little child who is struggling to survive.
In previous weeks I have said more than once to friends, "I feel like I have post-traumatic stress disorder." I don't so much feel like that now, actually. What I'm feeling now ismore like those feelings I had at the end of yesterday's long journey. However, instead of returning home, I'm having a return to self. Most things personal--relationship, work, music--all these things had been on the back burner since October 27, the day of diagnosis. And now that this journey of illness and hospital and pregnancy is nearing it's end I'm looking at the little messes that I left undone and it is most certainly making me edgy. If I could scoop out those buried problems and emotions with a melon baller and start fresh, I'd be psyched.
In the end, I suppose this is what it is to be an adult--figuring it all out, coming to terms with things and just dealing on a day to day basis. As a friend so aptly said today, "Most of my friends that are happy are actually single, child-less and behaving like children themselves." If only.
We went to Ohio, land of flat, wide open spaces, fried foods and dirty church festivals. We enjoyed the company of sassy cousins and wise aunts and uncles and Nana and Tata. I have been told that it is common for babies to make developmental leaps while away from home. This has certainly been the case with Desmond who, for the most part went to Ohio as a sweet and alert lump and came back to Brooklyn still sweet and alert but with hands that can grab objects of desire and place such objects into his mouth.
On our ride back both children were fantastic in the car, sleeping much of the first leg to Pittsburgh where we saw our 95-year old Great Grandma Sophia looking tan and happy in her new digs. The good behavior continued for the second leg of the long car ride and we were all happy to see the NY City skyline as we rounded the bend in Jersey.
It's always a mixed bag returning home; we are all excited to be in familiar surroundings but it always makes me edgy--i try to leave the home in a respectable state but the old messes remain. There is the unfinished CD re-organization project, the boxes of books that need to go, the bags of clothes to be donated, etc.
Upon entering the door, we were greeted by a foul odor and while Shane unloaded the car I did some investigating. I opened the fridge and seriously almost vomited when I smelled its contents. No sooner had I smelled the rot than I thought of the gallons of breast milk that lay behind the freezer door. It too had gone bad.
Shane and I wrapped dish towels around our faces and emptied out the fridge's contents and bleached its inside out. While I was sad to lose all that breast milk, it was strangely liberating letting it all go. While D was in the hospital, the pumping felt like all I could really do for him and although I moaned and groaned about it in the process, the process itself helped keep me grounded in a way. And throwing out that milk was having one less reminder of our hospital journey.
At Dezi's four month appointment, he received four immunizations. He had a bit of a cough and I anxiously asked his Dr. if I needed to be weary of him developing a cold. His pediatrician is a wonderful woman with a lovely and memorable speaking voice. She smiled and said, "From now on we're going to think of Desmond as a normal baby with reflux." An unremarkable statement that meant the world to me. He did get a cold with a bad cough (luckily for me, we were in the home of my super supportive and comforting Dr. daddy, aka Tata) and he recovered easily. And with that, I was able to let go of more fears.
He is growing quickly. He is meeting his milestones on time and is active and curious. The tissue should be growing around his patch as his body grows. Before his birth, I happened upon the blog of a little girl named Ava Helmick. She was also born with a diaphragmatic hernia that was repaired with a patch. She remained a healthy child until just before two when her patch de-hissed and has been in and out of the hospital ever since. Although, comparing Ava to Desmond is like comparing apples to oranges I can no longer read her blog because it sends me reeling. Perhaps if you have a moment, you can read it and send good thoughts to this little child who is struggling to survive.
In previous weeks I have said more than once to friends, "I feel like I have post-traumatic stress disorder." I don't so much feel like that now, actually. What I'm feeling now ismore like those feelings I had at the end of yesterday's long journey. However, instead of returning home, I'm having a return to self. Most things personal--relationship, work, music--all these things had been on the back burner since October 27, the day of diagnosis. And now that this journey of illness and hospital and pregnancy is nearing it's end I'm looking at the little messes that I left undone and it is most certainly making me edgy. If I could scoop out those buried problems and emotions with a melon baller and start fresh, I'd be psyched.
In the end, I suppose this is what it is to be an adult--figuring it all out, coming to terms with things and just dealing on a day to day basis. As a friend so aptly said today, "Most of my friends that are happy are actually single, child-less and behaving like children themselves." If only.
Thursday, July 2, 2009
Sunday, June 21, 2009
Best Thing Since Sliced Bread
Mahalia asks for him as soon as she wakes up. He is beginning to reciprocate with squeals of delight and always flashes his gummiest smile when she's in the room.
Siblings are simply the best.
Siblings are simply the best.
Monday, June 15, 2009
Prom Date
This little lady is Mira, little sister to Mahalia's friend, Nona. Nona is three weeks older than Mahalia and Mira is 4 weeks older than Dezi. I can't get enough of this tuxedo onesie.
Friday, June 12, 2009
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Monday, June 8, 2009
TLC
Today I was watching A Baby Story on TLC. I don't know why I continue watching this show. A few years ago, I vowed that I would only watch those episodes featuring couples of mixed race who did not live in NJ. As an aside, I have met several women in Brooklyn that have been on this show. There's always this awkward conversation that starts with, "I think I know you from somewhere." Of course, I feel certain that I know this person intimately and usually within moments realize that I've seen this person in labor, vagina blurred and all and the subsequent delivery. And then I feel embarrassed.
I'm thinking to myself while watching this show today, "shit. wouldn't it be nice if you could encapsulate your whole labor/delivery process and the first month with your new baby into one half-hour time period?" I'm also aggravated at how smoothly everything's going when the cameras return for the one month check up. Mommy's always made up, the baby's always asleep and everyone is smiling.
I take a breath and think of my own newborn and how most days, mothering my own children illuminates my inadequacies. I am impatient. I am disorganized. I think of how Mahalia puts her hands on her hips in defiance 5 times a day and how she told her teachers, "When you're angry, you can put your hands on your hips." I think about Desmond and how at most points during the day I'd love for him to go to sleep. I think about how I'm rarely feeling in control of what's going on. I take a breath and feel all mixed up about my negative feelings and think to myself, "oh, it's so like you to see everything in a negative light."
On a different day, things seem more manageable and I'm reminded that parenting is full of extremes and chaos and perhaps letting go is the best answer. So this afternoon instead of sweating and muttering under my breath and half-heartedly rocking Desmond while looking and thinking about putting away paper plates from Mahalia's party, I'll plop my ass on the couch and watch another lipsticked lady pop out a baby and remind myself that this is what I'm supposed to be doing now.
I'm thinking to myself while watching this show today, "shit. wouldn't it be nice if you could encapsulate your whole labor/delivery process and the first month with your new baby into one half-hour time period?" I'm also aggravated at how smoothly everything's going when the cameras return for the one month check up. Mommy's always made up, the baby's always asleep and everyone is smiling.
I take a breath and think of my own newborn and how most days, mothering my own children illuminates my inadequacies. I am impatient. I am disorganized. I think of how Mahalia puts her hands on her hips in defiance 5 times a day and how she told her teachers, "When you're angry, you can put your hands on your hips." I think about Desmond and how at most points during the day I'd love for him to go to sleep. I think about how I'm rarely feeling in control of what's going on. I take a breath and feel all mixed up about my negative feelings and think to myself, "oh, it's so like you to see everything in a negative light."
On a different day, things seem more manageable and I'm reminded that parenting is full of extremes and chaos and perhaps letting go is the best answer. So this afternoon instead of sweating and muttering under my breath and half-heartedly rocking Desmond while looking and thinking about putting away paper plates from Mahalia's party, I'll plop my ass on the couch and watch another lipsticked lady pop out a baby and remind myself that this is what I'm supposed to be doing now.
Tuesday, May 26, 2009
Friday, May 22, 2009
Landslides
Two really kind friends and neighbors shared their talents with me yesterday and today. One is a masseuse, one an accupuncturist.
I saw a woman, an old school Park Slope Hippie type, leaving her exercise class where Mahalia takes a dance class. She was cooing and singing to Dezi. I don't know why but I started talking to her about his surgery and his hernia. While I was talking I was thinking about how at the time of his discharge from Columbia I wanted so much to forget about CDH. I never wanted to think about it again. And as I blabbed away to that hippie I was having this whole internal conversation about how much calmer I must be feeling about Desmond's health to be talking so freely about it. I didn't feel like crying or anything. I actually was having feelings of pride, showing him off, looking all strong and normal and healthy.
And then, not 6 hours later, as I laid with those needles in my back, tears dripped out of my eyes. It didn't feel like that kind of hard, gut wrenching crying. It just felt like the release of so much build up, so much trauma and stress leaking out of my eyes.
I thought about little baby Mahalia that died. Her mother told me that her husband hadn't cried at all while they waited for her to pass. When she finally died, the nurses led them to a room to be alone and she said that he vomitted a lot and then cried hard. Some people do it that way, I guess.
I should say thank you to you now if you're reading this post. Thank you for checking in on me and thinking good thoughts for me and Shane and Mahalia and little Dezi. I have such deep feelings of gratitude for all of the kindness that has been displayed to us over the past few months.
I saw a woman, an old school Park Slope Hippie type, leaving her exercise class where Mahalia takes a dance class. She was cooing and singing to Dezi. I don't know why but I started talking to her about his surgery and his hernia. While I was talking I was thinking about how at the time of his discharge from Columbia I wanted so much to forget about CDH. I never wanted to think about it again. And as I blabbed away to that hippie I was having this whole internal conversation about how much calmer I must be feeling about Desmond's health to be talking so freely about it. I didn't feel like crying or anything. I actually was having feelings of pride, showing him off, looking all strong and normal and healthy.
And then, not 6 hours later, as I laid with those needles in my back, tears dripped out of my eyes. It didn't feel like that kind of hard, gut wrenching crying. It just felt like the release of so much build up, so much trauma and stress leaking out of my eyes.
I thought about little baby Mahalia that died. Her mother told me that her husband hadn't cried at all while they waited for her to pass. When she finally died, the nurses led them to a room to be alone and she said that he vomitted a lot and then cried hard. Some people do it that way, I guess.
I should say thank you to you now if you're reading this post. Thank you for checking in on me and thinking good thoughts for me and Shane and Mahalia and little Dezi. I have such deep feelings of gratitude for all of the kindness that has been displayed to us over the past few months.
Wednesday, May 20, 2009
Down in DUMBO
With Grandma Pammy in town, we stuffed the family into the bug and drove down to DUMBO to picnic in the sun.
The Princess kicked off her shoes and laid in the grass intermittently enjoying a flourless chocolate walnut cookie from Almondine.
Mr. Desmond spends most of his days snuggled inside his womblike carrier, intermittently snoozing and cooing at me.
He's beginning to enjoy his bath. He is very interested in his big sister.
The Princess kicked off her shoes and laid in the grass intermittently enjoying a flourless chocolate walnut cookie from Almondine.
Mr. Desmond spends most of his days snuggled inside his womblike carrier, intermittently snoozing and cooing at me.
He's beginning to enjoy his bath. He is very interested in his big sister.
Thursday, May 7, 2009
Scarred
Just after Desmond was born they whisked him to a little ICU on the labor and delivery floor. My Dr. had prepared me (verbally anyhow) for this moment telling me that they would say, "here's your baby!" and show me his face as they whisked him out the door. He would be intubated immediately, x-rayed to confirm diagnosis and the prodding would begin. I thought about that moment a lot leading up to delivery and talked about it a lot with girlfriends.
Tonight, after both children had fallen asleep, I washed the day's milk spillage off my body and returned downstairs to a toy strewn floor. As I cleared the dishes, I happened to glance over to the computer as a photo of Desmond being intubated flashed across the screen.
My wonderful and kind OBGYN, Dr. Simpson, asked for a camera and ran to snap a photo of the boy for Shane and I to see. The mood in the delivery room just moments before delivery was lighthearted, pushing was easy and fast and the other OBGYN in the room kept talking to me about her child's music teacher who I reminded her of. And so that great release when Dezi entered the world was anticlimactic in a way and as they shuffled him out of the room it suddenly became so somber. There were many answers that had been promised us upon delivery regarding the severity of the hernia, etc. I cried and cried. Dr. Simpson returned to the room with a photo of our sweet boy and I cried harder. Here is the first photo I ever saw.
It upset me more.
Why am I writing about this now? I'm not sure. Partly because I still feel unsteady at times and it's important to remember how this journey began and how far we've come. Partly because I was afraid to post that first picture when it was taken. I thought it was scary as hell and that it would scare friends. It seems like such a long time ago now and I'm reminding myself that it's good to face those things that are scary and this is an important part of the story that I never documented.
Earlier tonight I took a photo of Dezi's scars. Shane and I were joking in the hospital one time about how one day in the future Dezi could show off his scars to someone, a college girlfriend, perhaps, and tell her his story. She could comment on how brave he was. I'm so happy to show you that his scars are disappearing. They look like bug bites and they will probably not be visible to any college girlfriend. Take a look:
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Bad ass.
Tonight, after both children had fallen asleep, I washed the day's milk spillage off my body and returned downstairs to a toy strewn floor. As I cleared the dishes, I happened to glance over to the computer as a photo of Desmond being intubated flashed across the screen.
My wonderful and kind OBGYN, Dr. Simpson, asked for a camera and ran to snap a photo of the boy for Shane and I to see. The mood in the delivery room just moments before delivery was lighthearted, pushing was easy and fast and the other OBGYN in the room kept talking to me about her child's music teacher who I reminded her of. And so that great release when Dezi entered the world was anticlimactic in a way and as they shuffled him out of the room it suddenly became so somber. There were many answers that had been promised us upon delivery regarding the severity of the hernia, etc. I cried and cried. Dr. Simpson returned to the room with a photo of our sweet boy and I cried harder. Here is the first photo I ever saw.
It upset me more.
Why am I writing about this now? I'm not sure. Partly because I still feel unsteady at times and it's important to remember how this journey began and how far we've come. Partly because I was afraid to post that first picture when it was taken. I thought it was scary as hell and that it would scare friends. It seems like such a long time ago now and I'm reminding myself that it's good to face those things that are scary and this is an important part of the story that I never documented.
Earlier tonight I took a photo of Dezi's scars. Shane and I were joking in the hospital one time about how one day in the future Dezi could show off his scars to someone, a college girlfriend, perhaps, and tell her his story. She could comment on how brave he was. I'm so happy to show you that his scars are disappearing. They look like bug bites and they will probably not be visible to any college girlfriend. Take a look:
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Bad ass.
Tuesday, May 5, 2009
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Sunday, May 3, 2009
2
Although it's been only 3 years since I had an infant in our home, I'd forgotten the complicated emotions that seem to be attached to caring for one of these creatures--the inexplicable feelings of lonliness, the hefty weight of responsibility and the certainty of inadequacy. Compound that with the stress and exhaustion of the month before and I was reduced to a functionless heap of tears. I spent a couple of days frozen in fear that something could go wrong with his little body and required several pep talks from friends and family.
I seem to have made it through the dark woods to a clearing and have begun enjoying Desmond and Mahalia loving on Desmond. She pulled her step stool in to watch him in his crib and I overheard her talking to him. I believe the exact words were, "Dezi, you're the sweetest little brother in the whole wide world."
As far as I can tell, life with two kids is a shit load of work, WAY more than thinking you're just adding one and one together. The sum of two children is huge. Perhaps this is why my mother always said that because two children was such a huge change from one, adding three four and five seemed easy.
We do not really fit into the Bug and I've begun thinking about trading in my trusty yellow car for something more family friendly. Two weeks ago it seemed totally implausible but we are starting to get a little bit of a rhythm going.
I seem to have made it through the dark woods to a clearing and have begun enjoying Desmond and Mahalia loving on Desmond. She pulled her step stool in to watch him in his crib and I overheard her talking to him. I believe the exact words were, "Dezi, you're the sweetest little brother in the whole wide world."
As far as I can tell, life with two kids is a shit load of work, WAY more than thinking you're just adding one and one together. The sum of two children is huge. Perhaps this is why my mother always said that because two children was such a huge change from one, adding three four and five seemed easy.
We do not really fit into the Bug and I've begun thinking about trading in my trusty yellow car for something more family friendly. Two weeks ago it seemed totally implausible but we are starting to get a little bit of a rhythm going.
Wednesday, April 22, 2009
a patient patient
After being home for about 48 hours, Mr. Desmond ripped his feeding tube out of his nose. Shane and I stared at him for a minute. So, that's how you really look without anything at all coming from your body, eh? We decided not to replace it until we saw the pediatrician the next day.
As soon as we walked into the house, I knew that I would no longer be following the hospital feeding schedule. I knew that it would make me batty. I started breast feeding the little fellow. In terms of eating, he's no Mahalia. He suffers from reflux. In the noisy hospital I couldn't hear the gurgling that his guts make as he swallows. I'm not sure of the physiological causes of the reflux. I'm assuming that the organs developing in the chest cavity affected their normal growth. I wonder how long the reflux will last? Perhaps a notebook for writing questions down is a good idea? I'm starting one now.
There's an amazingly wacky lactation consultant that's a bit of a Brooklyn legend. Freda (pronounce like Fredda) Rosenfeld lives in one of the giant victorian homes in the neighborhood and has lived there for 30 years. She has an amazing Brooklyn accent and belongs to a theater club and was very excited to learn that Shane could get her some tickets to Exit the King. She watched Desmond breast feed and offered advice on exercises to deepen his suck. The woman knows so much about breast feeding that it's borderline creepy. As my sister said on the phone, "most consultants are a little weird." She also said at one point, "I can see in your eyes that you need to poop." She was talking to Dezi not me. She laid him on his back and rubbed a spot in the middle of his foot. He got really quiet and pooped. No lie. Anyhow, I was so happy to meet her and work with her and it gave me confidence that we could work all of this feeding stuff out.
The pediatrician recommended that we lose the tube and see what happens. I'm all for it. We'll be seeing her again on Friday to make sure weight has been gained.
I would be lying if I said that leaving the hospital has been nothing but totally blissful and smooth. Holy crap, bringing a baby home is a rattling experience even under normal circumstances. And here we are after having gone through this long, stressful experience with a new baby and it appears that we forgot to pack the "Desmond Endsley Baby Manual." There have been tears--from me, from Dezi, from MayMay. Shane is my super hero right now, taking good care of all of us and working.
It goes without saying, going from one to two children is insane and it's going to take a minute to find any sort of rhythm. It's the second time during this experience that I've thought to myself, "If I had only known...I would've been a more supportive friend..." Mahalia has been amazing through it all. Tonight when she burst into tears because I couldn't help her right away I had to explain to her that we're all going to have to be really patient with each other. It broke my heart a little. I was saying it out loud for my benefit as much as hers. I look back at old posts (as was suggested by a friend) and realize that we've come so far and that Dezi has come so far and that we will only continue to do so and it calms me down. Thank God for friends, eh?
As soon as we walked into the house, I knew that I would no longer be following the hospital feeding schedule. I knew that it would make me batty. I started breast feeding the little fellow. In terms of eating, he's no Mahalia. He suffers from reflux. In the noisy hospital I couldn't hear the gurgling that his guts make as he swallows. I'm not sure of the physiological causes of the reflux. I'm assuming that the organs developing in the chest cavity affected their normal growth. I wonder how long the reflux will last? Perhaps a notebook for writing questions down is a good idea? I'm starting one now.
There's an amazingly wacky lactation consultant that's a bit of a Brooklyn legend. Freda (pronounce like Fredda) Rosenfeld lives in one of the giant victorian homes in the neighborhood and has lived there for 30 years. She has an amazing Brooklyn accent and belongs to a theater club and was very excited to learn that Shane could get her some tickets to Exit the King. She watched Desmond breast feed and offered advice on exercises to deepen his suck. The woman knows so much about breast feeding that it's borderline creepy. As my sister said on the phone, "most consultants are a little weird." She also said at one point, "I can see in your eyes that you need to poop." She was talking to Dezi not me. She laid him on his back and rubbed a spot in the middle of his foot. He got really quiet and pooped. No lie. Anyhow, I was so happy to meet her and work with her and it gave me confidence that we could work all of this feeding stuff out.
The pediatrician recommended that we lose the tube and see what happens. I'm all for it. We'll be seeing her again on Friday to make sure weight has been gained.
I would be lying if I said that leaving the hospital has been nothing but totally blissful and smooth. Holy crap, bringing a baby home is a rattling experience even under normal circumstances. And here we are after having gone through this long, stressful experience with a new baby and it appears that we forgot to pack the "Desmond Endsley Baby Manual." There have been tears--from me, from Dezi, from MayMay. Shane is my super hero right now, taking good care of all of us and working.
It goes without saying, going from one to two children is insane and it's going to take a minute to find any sort of rhythm. It's the second time during this experience that I've thought to myself, "If I had only known...I would've been a more supportive friend..." Mahalia has been amazing through it all. Tonight when she burst into tears because I couldn't help her right away I had to explain to her that we're all going to have to be really patient with each other. It broke my heart a little. I was saying it out loud for my benefit as much as hers. I look back at old posts (as was suggested by a friend) and realize that we've come so far and that Dezi has come so far and that we will only continue to do so and it calms me down. Thank God for friends, eh?
Saturday, April 18, 2009
HSW--AKA home sweet home
When we arrived at the hospital this morning he was especially chipper and interactive, like he knew we were coming to hake him home.
He passed the car seat test with flying colors and slept the whole way home from the hospital.
Mahalia is psyched to have a real live doll to play with. Here she is covering him and uncovering him. We three took a nap this afternoon while daddy played a show on Broadway.
It is such sweet relief to be home.
He passed the car seat test with flying colors and slept the whole way home from the hospital.
Mahalia is psyched to have a real live doll to play with. Here she is covering him and uncovering him. We three took a nap this afternoon while daddy played a show on Broadway.
It is such sweet relief to be home.
Friday, April 17, 2009
A Mixed Bag
Baby Mahalia died last night.
Her bed was right next to Dezi's and I watched her get sicker with each passing day. Having seen her decline, it is a relief to know that baby Mahalia's suffering is over. I sat with Mahalia's mom,Patricia, today in the hospital lobby and listened to the story of her passing and was so deeply moved by her devotion to her little baby. She is 26. Partricia and her husband are cremating Mahalia's remains and going home to Peru to be with family.
What a mystery life is.
What a month this has been.
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Dezi will have to sit in his car seat for an hour tomorrow to make sure that his reflux doesn't present problems in that position. The nurse who is choosing to put him to the test said she was just being very cautious. There will surely be papers to sign, Drs. to wait on, etc. Then Dezi will see the sky for the first time, breathe some fresh air, take his first car ride, see his first tree, see his first cat, and be in his beep free home for the first time.
Forecast for tomorrow: 75 degrees and sunny. I am a ball of nerves.
Her bed was right next to Dezi's and I watched her get sicker with each passing day. Having seen her decline, it is a relief to know that baby Mahalia's suffering is over. I sat with Mahalia's mom,Patricia, today in the hospital lobby and listened to the story of her passing and was so deeply moved by her devotion to her little baby. She is 26. Partricia and her husband are cremating Mahalia's remains and going home to Peru to be with family.
What a mystery life is.
What a month this has been.
----------------------------------------------------------------------------------
Dezi will have to sit in his car seat for an hour tomorrow to make sure that his reflux doesn't present problems in that position. The nurse who is choosing to put him to the test said she was just being very cautious. There will surely be papers to sign, Drs. to wait on, etc. Then Dezi will see the sky for the first time, breathe some fresh air, take his first car ride, see his first tree, see his first cat, and be in his beep free home for the first time.
Forecast for tomorrow: 75 degrees and sunny. I am a ball of nerves.
code HAM alert--AKA High Agitation Mode
On Thursday the nurses still insisted that he'd be coming home on Friday or Saturday morning. I asked tentatively, "Ummm, how will I know when they plan on sending him? I mean, I don't mean to be a pain but my husband is working and I have a 2-yr old so I sorta need to plan my life. I'm going to plan for a Saturday pick up"
My brain is moving faster than ever, not always productively. I start one simple task and in the middle, remember something else I started, and then none of it really gets done. There's a necessary trip to The Fairway, laundry, and other normal domestic irritants that need to be completed.
I am nervous. There will be two children to look after starting in about 24 hours. Shane will help me fetch him from the hospital but will then be heading to Times Square for two shows and I will be here, testing my skills as a mother of two children. There's nothing like a little trial by fire.
Mahalia has a little cough and I feel a little nagging ball of anxiety forming in my chest--what if Dezi get's a cold? I'm starting to think of where I will strategically place bottles of Purelle throughout the house.
I've placed the NG tube twice. It was not so much fun. I gagged the crap out of Dezi but he recovered quickly. Me, not so much. Why is is that nerves always seem to know which part of your body to shake in order to make the nerve inducing task the most difficult? My hands were shaking like crazy and the nurse rubbed my back, "you're okay." Shane too, standing next to me, offered reassurance.
I feel confused about feeding. He's on such a strict schedule at the hospital and it's not clear if I'm to uphold that or if I can relax a little bit about the feeding time, letting Dezi find his own rhythm.
There will be a visiting nurse coming to our house in Brooklyn the day after he comes home, just to make sure we're okay.
I talk to friends on the phone and am incapable of carrying on a linear conversation.
My brain is a pinball. Even now, I can't write a coherent blog post. I'm going to stop trying. I'll try again when I'm not functioning under HAM circumstances.
My brain is moving faster than ever, not always productively. I start one simple task and in the middle, remember something else I started, and then none of it really gets done. There's a necessary trip to The Fairway, laundry, and other normal domestic irritants that need to be completed.
I am nervous. There will be two children to look after starting in about 24 hours. Shane will help me fetch him from the hospital but will then be heading to Times Square for two shows and I will be here, testing my skills as a mother of two children. There's nothing like a little trial by fire.
Mahalia has a little cough and I feel a little nagging ball of anxiety forming in my chest--what if Dezi get's a cold? I'm starting to think of where I will strategically place bottles of Purelle throughout the house.
I've placed the NG tube twice. It was not so much fun. I gagged the crap out of Dezi but he recovered quickly. Me, not so much. Why is is that nerves always seem to know which part of your body to shake in order to make the nerve inducing task the most difficult? My hands were shaking like crazy and the nurse rubbed my back, "you're okay." Shane too, standing next to me, offered reassurance.
I feel confused about feeding. He's on such a strict schedule at the hospital and it's not clear if I'm to uphold that or if I can relax a little bit about the feeding time, letting Dezi find his own rhythm.
There will be a visiting nurse coming to our house in Brooklyn the day after he comes home, just to make sure we're okay.
I talk to friends on the phone and am incapable of carrying on a linear conversation.
My brain is a pinball. Even now, I can't write a coherent blog post. I'm going to stop trying. I'll try again when I'm not functioning under HAM circumstances.
Tuesday, April 14, 2009
Saturday, April 11, 2009
NG
I made a joke with another NICU mom that as a form of therapy for the parents they should let them smash one of the NICU monitors to pieces upon discharge. One really doesn't realize how wonderful it is to hold a baby who is unfettered by cords until holding one who is. One wrong move with Dezi and it's a chorus of beeps. I can't help but think that on some level he won't miss all that beeping when he comes home.
On his one month birthday he finally took a whole feed from the bottle. I was not prepared for the amount of time it might take for Desmond to eat as he should. I didn't know that eating required so much coordination of breath and while it's hard for me to comprehend it's clear that it really is a lot of work for a kid like Dezi. I've had moments of frustration this week. The attending physician in this NICU had mentioned to me on Wednesday that she wanted him to go home without a feeding tube. Knowing this, I felt that I could be patient this week. She left on Wednesday for Passover. So when I arrived on Friday and the nurse handed me a packet of papers and said, "read this. I'm going to show you how to pass a nasal gastric tube today" I heard a little crack in my heart. (The nurse doesn't know about my glass heart syndrome. How could she?) I couldn't help but to blurt out, "I'd like to talk to the Dr. please" and started strongly questioning her. The nurse is young. The nurse is Filipino (go figure.) She seems rattled by my questions and retreats to the desk and calls the Dr.
My logical self knows that Desmond needs to come home, tubes or no tubes. He is so alert. He is much more alert than the baby next to him even and they share a birthday. My logical self knows that once he is home I will be able to feed him and it will only be a matter of weeks before he gets the hang of it. My emotional self feels scared a little bit by the thought of having a baby at home with a tube coming out of his nose. I think about the questions people will ask me on the playground and I don't feel like answering them. I don't want to talk about CDH anymore or have people look at me like they feel sorry for me. I'd like for my life to resume now.
All that aside, I read the papers as I should. I learn how to measure the tube and how to apply the tape to his cheek. I learn how to push air into his stomach and use the tiny stethoscope to listen for the slight whooshing of air as it enters his belly. I practiced putting the NG tube into a doll and stood by his bed and gave the young, filipino nurse step by step instructions so that she could make sure I understood how to do everything. One time in college an ENT put a tiny camera into my nose and down my throat to look at my vocal cords. It did not hurt and I think about that as the nurse pushes the tube into Dezi's nose. Mahalia heard him cry a little bit and was worried. But he is a good baby, a quiet baby who does not complain much although he does have much to complain about, really, when you think of it, and he settled quickly.
Earlier in the week I bought a magazine to read on the train home from the hospital. It is Oprah's magazine and even though I have a problem with how she puts herself on the cover every single month I do enjoy looking at her products of choice. The woman has good taste. Anyhow, there's a beautiful piece inside that magazine called 'Spring Awakening' written by this guy named Rick Bass. Wouldn't you know, it's about the birth of his first daughter who stopped breathing during her first night of life. They had to put her in an incubator and he stared at the monitors sitting at her bedside all night long in case she woke up. I love most what he says about parenting, "What I think I felt, that next day, was a newness of responsibility: an utter and concrete reminder that I was no longer the most important person in the world–-that, in fact, I was nothing, and she was everything." I'm feeling it so hard right now and am reminding myself to be brave in the face of those things that seem scary to me.
Here's the link to the full article if you'd like to read it: http://www.oprah.com/article/omagazine/200904-omag-rick-bass
In other news, some really wonderful and generous friends pitched in to hire some cleaners to give our apartment a once over. If you're reading this now and are one of those people, please know that Shane and I are appreciative beyond words. It was such a relief to walk into a tidy and orderly home and it was a wonderful treat at the end of a tiring day.
On his one month birthday he finally took a whole feed from the bottle. I was not prepared for the amount of time it might take for Desmond to eat as he should. I didn't know that eating required so much coordination of breath and while it's hard for me to comprehend it's clear that it really is a lot of work for a kid like Dezi. I've had moments of frustration this week. The attending physician in this NICU had mentioned to me on Wednesday that she wanted him to go home without a feeding tube. Knowing this, I felt that I could be patient this week. She left on Wednesday for Passover. So when I arrived on Friday and the nurse handed me a packet of papers and said, "read this. I'm going to show you how to pass a nasal gastric tube today" I heard a little crack in my heart. (The nurse doesn't know about my glass heart syndrome. How could she?) I couldn't help but to blurt out, "I'd like to talk to the Dr. please" and started strongly questioning her. The nurse is young. The nurse is Filipino (go figure.) She seems rattled by my questions and retreats to the desk and calls the Dr.
My logical self knows that Desmond needs to come home, tubes or no tubes. He is so alert. He is much more alert than the baby next to him even and they share a birthday. My logical self knows that once he is home I will be able to feed him and it will only be a matter of weeks before he gets the hang of it. My emotional self feels scared a little bit by the thought of having a baby at home with a tube coming out of his nose. I think about the questions people will ask me on the playground and I don't feel like answering them. I don't want to talk about CDH anymore or have people look at me like they feel sorry for me. I'd like for my life to resume now.
All that aside, I read the papers as I should. I learn how to measure the tube and how to apply the tape to his cheek. I learn how to push air into his stomach and use the tiny stethoscope to listen for the slight whooshing of air as it enters his belly. I practiced putting the NG tube into a doll and stood by his bed and gave the young, filipino nurse step by step instructions so that she could make sure I understood how to do everything. One time in college an ENT put a tiny camera into my nose and down my throat to look at my vocal cords. It did not hurt and I think about that as the nurse pushes the tube into Dezi's nose. Mahalia heard him cry a little bit and was worried. But he is a good baby, a quiet baby who does not complain much although he does have much to complain about, really, when you think of it, and he settled quickly.
Earlier in the week I bought a magazine to read on the train home from the hospital. It is Oprah's magazine and even though I have a problem with how she puts herself on the cover every single month I do enjoy looking at her products of choice. The woman has good taste. Anyhow, there's a beautiful piece inside that magazine called 'Spring Awakening' written by this guy named Rick Bass. Wouldn't you know, it's about the birth of his first daughter who stopped breathing during her first night of life. They had to put her in an incubator and he stared at the monitors sitting at her bedside all night long in case she woke up. I love most what he says about parenting, "What I think I felt, that next day, was a newness of responsibility: an utter and concrete reminder that I was no longer the most important person in the world–-that, in fact, I was nothing, and she was everything." I'm feeling it so hard right now and am reminding myself to be brave in the face of those things that seem scary to me.
Here's the link to the full article if you'd like to read it: http://www.oprah.com/article/omagazine/200904-omag-rick-bass
In other news, some really wonderful and generous friends pitched in to hire some cleaners to give our apartment a once over. If you're reading this now and are one of those people, please know that Shane and I are appreciative beyond words. It was such a relief to walk into a tidy and orderly home and it was a wonderful treat at the end of a tiring day.
Wednesday, April 8, 2009
Hanami
After pumping this afternoon, behind closed curtains, I suddenly had the overwhelming urge to breast feed. I hadn't done it yet with Dezi. I've been afraid to try in case it slowed down his progress with the bottle somehow. I'm also slightly afraid of the headstrong nurses in the NICU. As wonderful as they are, being a nurse seems to require a certain level of anality (no offense, Marty! Have you ever seen the towel cupboards inside my mother's house? That's right, she's a former nurse.) and I didn't know if breast feeding was part of the Dr.'s orders or not.
My sweet little boy latched right on and started slurping away. I have to admit that it was the most wonderful feeling. You're probably thinking that I cried, right? I actually managed to keep it together. It made me feel totally euphoric and I'm so happy that it looks like the D will get to breast feed after he busts outta' that joint.
Have you all seen the Cherry Blossoms at the Brooklyn Botanic Gardens? It's giving me warm fuzzies all over thinking about sitting under those pink puffs with my boy and Lady M. If you're reading this and live in the city, let's a make a date to do that together.
My sweet little boy latched right on and started slurping away. I have to admit that it was the most wonderful feeling. You're probably thinking that I cried, right? I actually managed to keep it together. It made me feel totally euphoric and I'm so happy that it looks like the D will get to breast feed after he busts outta' that joint.
Have you all seen the Cherry Blossoms at the Brooklyn Botanic Gardens? It's giving me warm fuzzies all over thinking about sitting under those pink puffs with my boy and Lady M. If you're reading this and live in the city, let's a make a date to do that together.
Sunday, April 5, 2009
Feeling better now. Thanks.
The first day in the NICU the NICU Psychologists taped a letter to Desmond's bassinet. The first page was a welcome letter. The second page had quotes from parents describing some of the emotions that a person might experience during their time in the NICU. I remember one of them said, "Having our baby was supposed to be so joyous and it ended up being a nightmare." The third page was a list of helpful tips. I can't find the list now but I remember the first few: Eat, Sleep, Take Breaks. Such basic tips but so easy to forget. I've been thinking about my hardest days since we've been in the hospital, those days when the tears come easily and realized that I'm always my most tired on those days. Usually, I've also put off eating and most certainly have not given myself a break.
Spring is really here now, marked by the opening of the Prospect Park Carousel. A friend looked after Mahalia who reported that she went on an adventure with Anna through the park. I made my way to the hospital while Shane played a matinee. Dezi chugged down 65 ccs which means we're in the home stretch here. I sat on a bench back in Brooklyn eating my favorite ice, Cherry Chip Explosion and letting the sun warm my skin. At the hospital I opened the blind for Dezi to get some sun too. He seemed to like it.
He has a soft personality and will probably have a soft voice and manner like his daddy. During my brief visits with him I've been trying to be extremely present and in the moment, it's a good skill to practice. I sense that he is starting to recognize me. When I hold him against my skin he promptly falls asleep.
I bought him a new and fabulous bouncy seat for his homecoming. Thank you for sending supportive messages. They help and mean the world to me.
Spring is really here now, marked by the opening of the Prospect Park Carousel. A friend looked after Mahalia who reported that she went on an adventure with Anna through the park. I made my way to the hospital while Shane played a matinee. Dezi chugged down 65 ccs which means we're in the home stretch here. I sat on a bench back in Brooklyn eating my favorite ice, Cherry Chip Explosion and letting the sun warm my skin. At the hospital I opened the blind for Dezi to get some sun too. He seemed to like it.
He has a soft personality and will probably have a soft voice and manner like his daddy. During my brief visits with him I've been trying to be extremely present and in the moment, it's a good skill to practice. I sense that he is starting to recognize me. When I hold him against my skin he promptly falls asleep.
I bought him a new and fabulous bouncy seat for his homecoming. Thank you for sending supportive messages. They help and mean the world to me.
Friday, April 3, 2009
Pity Party
I'm posting at the end of a long day at the end of a long week at the end of a long month. I'm feeling real sorry for myself so if you don't feel like reading a healthy dose of bitching and moaning, do yourself a favor and close this window immediately.
It is rainy today in NYC. I'm officially tired of hauling ass up to Northern Manhattan. It took two hours this morning to get to the hospital. Put a little rain on the roads in the city and those drivers who normally drive like maniacs start acting like they've got their drivers ed instructors in the passenger seat. We spent approximately twice as much time in the car as we did with Desmond.
He is supposed to be home now. Compared to the two pound NICU babies who are still supposed to be cooking in utero, Dezi looks like a 14 year old. He is more alert with each passing day and I can't help but think that he's bored in that NICU, staring at the Dallas BBQ across the street. It makes it harder and harder to leave there after our all-too-brief visits.
He's made good progress with the nipple this week but is still not eating enough from the bottle. My heart is like glass and it takes up more space in my chest than it should. When the Dr. utters even the slightest muttering that can be construed as negative I can feel parts of my glass heart shattering. She says to Dezi, "You're a big talker! You should be eating 45 ccs!" He has only had 30 and I want to cry. I know that means that we'll be spending more time here. My giant eyeballs give me away and she starts to backtrack a little, "but that's okay. we'll wait for you. take your time." My tear ducts are like over filled water balloons today. I haven't really cried but feel like I could at any moment. It is because I am tired.
Patricia, little Mahalia's mom, comes to Dezi's bedside to chat with me. Mahalia has surprised everyone, living longer than they think she should. They are all waiting for her heart to stop. I am having trouble talking to her and looking at her in the eyes. It is too painful and in the moment I cannot think of anything to say to her.
I started bleeding today from the old private parts. I call Dr. Daddy to ask if I should see my OB. We chat for a minute and he says that I need rest. Mother picks up the phone, "You've been pushing it like you never even had a baby." I sense that she's been holding this one back and I don't know what to say. If given the choice, believe me, I would've spent the last 4 weeks in my pajamas with my feet propped up on the coffee table checking out Ellen DeGeneres. It was not in my cards.
Ho hum. On a positive note, my Mahalia is asleep now. She held Dezi again today, singing to him and gently rubbing her forehead against his head. I told her at bedtime that I was really proud of how gentle she was with him and what a great big sister she is. She said, "He's coming home really soon." I know she is right. He will be home soon. The waiting, though, is getting brutal.
It is rainy today in NYC. I'm officially tired of hauling ass up to Northern Manhattan. It took two hours this morning to get to the hospital. Put a little rain on the roads in the city and those drivers who normally drive like maniacs start acting like they've got their drivers ed instructors in the passenger seat. We spent approximately twice as much time in the car as we did with Desmond.
He is supposed to be home now. Compared to the two pound NICU babies who are still supposed to be cooking in utero, Dezi looks like a 14 year old. He is more alert with each passing day and I can't help but think that he's bored in that NICU, staring at the Dallas BBQ across the street. It makes it harder and harder to leave there after our all-too-brief visits.
He's made good progress with the nipple this week but is still not eating enough from the bottle. My heart is like glass and it takes up more space in my chest than it should. When the Dr. utters even the slightest muttering that can be construed as negative I can feel parts of my glass heart shattering. She says to Dezi, "You're a big talker! You should be eating 45 ccs!" He has only had 30 and I want to cry. I know that means that we'll be spending more time here. My giant eyeballs give me away and she starts to backtrack a little, "but that's okay. we'll wait for you. take your time." My tear ducts are like over filled water balloons today. I haven't really cried but feel like I could at any moment. It is because I am tired.
Patricia, little Mahalia's mom, comes to Dezi's bedside to chat with me. Mahalia has surprised everyone, living longer than they think she should. They are all waiting for her heart to stop. I am having trouble talking to her and looking at her in the eyes. It is too painful and in the moment I cannot think of anything to say to her.
I started bleeding today from the old private parts. I call Dr. Daddy to ask if I should see my OB. We chat for a minute and he says that I need rest. Mother picks up the phone, "You've been pushing it like you never even had a baby." I sense that she's been holding this one back and I don't know what to say. If given the choice, believe me, I would've spent the last 4 weeks in my pajamas with my feet propped up on the coffee table checking out Ellen DeGeneres. It was not in my cards.
Ho hum. On a positive note, my Mahalia is asleep now. She held Dezi again today, singing to him and gently rubbing her forehead against his head. I told her at bedtime that I was really proud of how gentle she was with him and what a great big sister she is. She said, "He's coming home really soon." I know she is right. He will be home soon. The waiting, though, is getting brutal.
Wednesday, April 1, 2009
Tenderoni
There's a really great priest that makes rounds in the NICU. He wears a Yankees watch and hands out little stuffed animals to the babies. Every time he approaches me at Dezi's bedside he says the same thing, "Oh!! Desmond! It must be Desmond the 4th or at least the 3rd! That's too big of a name for a little baby." On Sunday he pointed to Dezi's toes and said, "When they start moving their toes that way it means they're getting ready for the front door."
The very next day, the nurses informed me that he was, in fact, going to graduate to the 8th Floor AKA the step-down NICU. It's quite peaceful there. There is way less beeping, no babies being shuffled to the operating room and no teary moms in hospital gowns. On this floor the babies are one step closer to going home. Dezi's last challenge is to take all of his feedings from a nipple (not mine but one one on a bottle.) He is still getting breast milk thru a tube and on Monday had a hard time eating from the nipple. Delores said that he was getting tachypneic while eating which means that his breathing was accelerating significantly while eating. The Dr. mentioned that it wouldn't be out of the realm of possibility for our boy to come home with a feeding tube. Her feeling is that he's doing too well in every other way to stay at the hospital, that it would be better for him to be home. Having a feeding tube would require that while Dezi continues practicing eating from a nipple and as long as he needs the feeding tube, Shane and I would be responsible for changing the tube weekly. It's entrance is in his nose and the tip is in the stomach, right, Dad? Sounds a little scary, eh? Anyhow, I want this kid at home. I want him home so much that it's starting to hurt a little bit. So I'll take him any way I can.
The GREAT news is that he did some good eating yesterday and even better eating today. Dolores excitedly said, "He wants to go home without that feeding tube!" So I'm hopeful that after a few more days of practice he will really get the hang of it and we can indeed bring him home tube free.
He's a little tenderoni and I wonder if I'll be forever cautious with him in life knowing the intense course he had in his first weeks. I worry that I'm about to create a little Mama's boy. When he's old enough and tells me not to be so protective I'll share this blog with him, give him a sense of what he came from.
The very next day, the nurses informed me that he was, in fact, going to graduate to the 8th Floor AKA the step-down NICU. It's quite peaceful there. There is way less beeping, no babies being shuffled to the operating room and no teary moms in hospital gowns. On this floor the babies are one step closer to going home. Dezi's last challenge is to take all of his feedings from a nipple (not mine but one one on a bottle.) He is still getting breast milk thru a tube and on Monday had a hard time eating from the nipple. Delores said that he was getting tachypneic while eating which means that his breathing was accelerating significantly while eating. The Dr. mentioned that it wouldn't be out of the realm of possibility for our boy to come home with a feeding tube. Her feeling is that he's doing too well in every other way to stay at the hospital, that it would be better for him to be home. Having a feeding tube would require that while Dezi continues practicing eating from a nipple and as long as he needs the feeding tube, Shane and I would be responsible for changing the tube weekly. It's entrance is in his nose and the tip is in the stomach, right, Dad? Sounds a little scary, eh? Anyhow, I want this kid at home. I want him home so much that it's starting to hurt a little bit. So I'll take him any way I can.
The GREAT news is that he did some good eating yesterday and even better eating today. Dolores excitedly said, "He wants to go home without that feeding tube!" So I'm hopeful that after a few more days of practice he will really get the hang of it and we can indeed bring him home tube free.
He's a little tenderoni and I wonder if I'll be forever cautious with him in life knowing the intense course he had in his first weeks. I worry that I'm about to create a little Mama's boy. When he's old enough and tells me not to be so protective I'll share this blog with him, give him a sense of what he came from.
Monday, March 30, 2009
3/30/2009
It is my birthday today. Today I am 33. More lucky threes.
Sometime during this pregnancy I remember saying to Shane, "Maybe we'll get to bring the boy home for my birthday." No such luck. He is doing well, learning to eat, literally taking baby steps. We are trying to be patient and take it all one day at a time. But I am starting to get antsy.
Every person I see seems to ask me the same two questions: a) When is he coming home? and b) How are YOU doing?
I can answer both of these questions with one answer--I do not know. I have no idea when he is coming home and I have no idea how I am doing. I dare not ask the first question of Dr.s and nurses in the NICU. I understand that this is not a question that they would ever answer for the same reason I should have known better to utter the thought that perhaps he would come home for my birthday. There is no use hoping for something that is not in your control. I think about what Dolores the feeding specialist said, "He's in charge here. He'll tell us what he needs." I remind myself that he is so well cared for in his little NICU pod.
This entire experience has gone by in a flash. I am in a time warp. It is always morning and I am always fumbling through the day trying to get to the hospital and do something fun with Mahalia and, oh shit, it's already dinner time? When it is over, this ordeal, I would like to sleep deeply (which won't happen for obvious reasons.) I would like to go somewhere that is overwhelmingly beautiful and just sit and be quiet.
Another day older, another day gone when the sun goes down.
Sometime during this pregnancy I remember saying to Shane, "Maybe we'll get to bring the boy home for my birthday." No such luck. He is doing well, learning to eat, literally taking baby steps. We are trying to be patient and take it all one day at a time. But I am starting to get antsy.
Every person I see seems to ask me the same two questions: a) When is he coming home? and b) How are YOU doing?
I can answer both of these questions with one answer--I do not know. I have no idea when he is coming home and I have no idea how I am doing. I dare not ask the first question of Dr.s and nurses in the NICU. I understand that this is not a question that they would ever answer for the same reason I should have known better to utter the thought that perhaps he would come home for my birthday. There is no use hoping for something that is not in your control. I think about what Dolores the feeding specialist said, "He's in charge here. He'll tell us what he needs." I remind myself that he is so well cared for in his little NICU pod.
This entire experience has gone by in a flash. I am in a time warp. It is always morning and I am always fumbling through the day trying to get to the hospital and do something fun with Mahalia and, oh shit, it's already dinner time? When it is over, this ordeal, I would like to sleep deeply (which won't happen for obvious reasons.) I would like to go somewhere that is overwhelmingly beautiful and just sit and be quiet.
Another day older, another day gone when the sun goes down.
Friday, March 27, 2009
Big Sister
Mahalia is going to be an incredible big sister. I can tell already. She spent an hour with him today, humming him lullabies and showing him his stuffed animals. It was her first time holding Dezi and she was so proud. My heart swells.
Tuesday, March 24, 2009
Angels
My hands are chapped from excessive Purelle useage and my cuticles have been sufficiently nervously picked. I'm totally into the sterility of the hospital and wish that I lived in a house that was as clean. I would like to hire someone to do a deep clean of our cozy but dirty apartment in Brooklyn before Desmond comes home.
Dolores, the NICU's developmental feeding specialist, is one of the angels of the NICU. She has worked with Desmond for three days. She is a bad ass, a feeding rock star and appropriately looks like a cross between Joni Mitchell and Janice, the lead guitar player from the Muppet Show's band, Electric Mayhem. I am fascinated by her job and I ask her the path she took to become a feeding specialist. It turns out that her background is in special education and before becoming the feeding specialist she worked as an early interventionist with families in the NICU. She speaks my language and says amazing things to Dezi while coaxing him to take the bottle. Her voice is soft and she assures Dezi that he's, "Doing good work." She also mentions to me that we need to keep the feeding experiences positive and encourages me to cheer him on too. I keep waiting for her to say, "Fer sure, Dezi."
She explains to me that a baby who is as old as Dezi is (two weeks) who hasn't yet swallowed anything other than saliva can have difficulty coordinating sucking and swallowing. Also, for a little guy who's trying to master breathing, he gets a little spooked when he has to hold his breath to suck. His first bottle which contains about 1 teaspoon of milk took a little time. He fights it a little bit which makes sense for a kid who is used to having nurses stick little suctioning tubes into his mouth and nose. It was amazing watching him get the hang of it all in the confident, calming and reassuring hands of Dolores. In the two days since that first bottle he's become more comfortable with sucking. When I popped the nipple in his mouth today he knew just what to do with it. Shane watched him bottle feed for the first time today and said later that it was really, really wonderful to see him eating. Go, Dezi, go!
All children with CDH experience varying degrees of reflux. He's given medicine to keep the reflux to a minimum and has been doing very well so far. So well, in fact, that yesterday they discontinued giving him lipids and today they were able to remove the last intravenous line which was delivering the TPN (total nutrition.) It is an incredible feeling, a rush of joy, each time they tell me another tube has been removed.
He's working on breathing without his CPAP as well. And has been off of it for several hours at one time.
The daffodils are starting to bloom. The crocuses are here too. Mahalia is fighting what I hope to be her last winter cold. I am looking forward to bringing our boy home.
Dolores, the NICU's developmental feeding specialist, is one of the angels of the NICU. She has worked with Desmond for three days. She is a bad ass, a feeding rock star and appropriately looks like a cross between Joni Mitchell and Janice, the lead guitar player from the Muppet Show's band, Electric Mayhem. I am fascinated by her job and I ask her the path she took to become a feeding specialist. It turns out that her background is in special education and before becoming the feeding specialist she worked as an early interventionist with families in the NICU. She speaks my language and says amazing things to Dezi while coaxing him to take the bottle. Her voice is soft and she assures Dezi that he's, "Doing good work." She also mentions to me that we need to keep the feeding experiences positive and encourages me to cheer him on too. I keep waiting for her to say, "Fer sure, Dezi."
She explains to me that a baby who is as old as Dezi is (two weeks) who hasn't yet swallowed anything other than saliva can have difficulty coordinating sucking and swallowing. Also, for a little guy who's trying to master breathing, he gets a little spooked when he has to hold his breath to suck. His first bottle which contains about 1 teaspoon of milk took a little time. He fights it a little bit which makes sense for a kid who is used to having nurses stick little suctioning tubes into his mouth and nose. It was amazing watching him get the hang of it all in the confident, calming and reassuring hands of Dolores. In the two days since that first bottle he's become more comfortable with sucking. When I popped the nipple in his mouth today he knew just what to do with it. Shane watched him bottle feed for the first time today and said later that it was really, really wonderful to see him eating. Go, Dezi, go!
All children with CDH experience varying degrees of reflux. He's given medicine to keep the reflux to a minimum and has been doing very well so far. So well, in fact, that yesterday they discontinued giving him lipids and today they were able to remove the last intravenous line which was delivering the TPN (total nutrition.) It is an incredible feeling, a rush of joy, each time they tell me another tube has been removed.
He's working on breathing without his CPAP as well. And has been off of it for several hours at one time.
The daffodils are starting to bloom. The crocuses are here too. Mahalia is fighting what I hope to be her last winter cold. I am looking forward to bringing our boy home.
Sunday, March 22, 2009
Desmond's Big Day
Dezi's been making slow but steady progress over the last few days. His oxygen is at 21% and the surgeons, happy with his progress, recommended taking him off of CPAP for short spurts. He's also been receiving breast milk through a tube which, if tolerated, gets increased every 12 hours. So hour one of feeding, the little guy got 1 cc of milk per hour through a continuous drip. After 12 hours, he received 2 ccs, etc. Today, the nurse introduced the bottle to him and he seemed a little startled and unsure what to do with it in his mouth. However, his pacifier suck resonates across the NICU so we are hopeful and confident that he'll soon be into eating.
The best part of the day was seeing his little face without anything on it impeding our view. We haven't seen him like that since the glimpse we got right after birth. Like his mommy, he has giant eyeballs. And in most photos I took of him today he looks a little like a deer in the headlights but is irresistable all the same.
The best part of the day was seeing his little face without anything on it impeding our view. We haven't seen him like that since the glimpse we got right after birth. Like his mommy, he has giant eyeballs. And in most photos I took of him today he looks a little like a deer in the headlights but is irresistable all the same.
Saturday, March 21, 2009
Father and Son
Sometimes Mahalia calls Shane, "Honey Daddy."
He really is the sweetest. His schedule finally allowed him to sit and hold Dezi yesterday for the first time.
Thursday, March 19, 2009
All Heart
The nurses told me that I could buy a mobile to attach to the side of Dezi's crib. Besides pumping, I'm pretty much unable to do anything for the little guy. Feeling so helpless in caring for him leaves me feeling deflated. They could tell me they needed snow from the north pole for this kid and I would find a way to get it. And so, I ventured out into the real world to purchase a mobile. I take a rush hour train and promptly decide that I will be taking a cab home.
We are staying at a friend's home on 61st St. in Manhattan. Oddly, I'm antsy in my own house. It feels strange to be there without him. He and I spent so much time there together, watching crap TV, knitting and I want him to be home with me now. I am thankful to be staying in the apartment. It's like a little vacation amidst all this insanity.
I walked to the train at Columbus circle. I ordered a coffee at Starbucks. Today, he is 10 days old and I suddenly have a vivid memory of standing in front of a hardware store in Brooklyn with Mahalia in a sling, explaining to a stranger that she is 10 days old. I kiss her head and the Brooklynite tells me not to spoil her too much. I've held Dezi two times and kissed him once.
I feel like an alien walking down the street. I just had a baby and besides my milk boobs and a few stitches that are out of site, I've got nothing to show for it. I am all heart and no brain. I eavesdrop on a conversation between 6 or 7 very blond business women in Starbucks. One of them is telling the others about using her miles to get a hotel room in Rome. I want to punch her.
Dezi was uncomfortable all day yesterday and his breathing was accelerated. The surgeons order a chest x-ray because they're concerned that his patch is too weak in some areas. It's called de-hissing. I don't know why. If true, he'll need another surgery. The x-ray is inconclusive. They'll do another tomorrow.
I picked up the car from the parking lot. It has a flat tire. Funny enough, we brought the car to the Firestone Shop two days ago with a flat tire. They fixed it with a patch. Apparently the patch de-hissed. In the darkest part of my mind I think of patches de-hissing and how patches are generally temporary measures to repair something and I worry about Dezi's patch and his future. This kind of thinking doesn't help me and I force myself back around. If we are only lucky with one patch this week let it be Dezi's.
At the hospital I see Patricia, my recovery roommate. I ask about her daughter Mahalia and she tells me that Mahalia is going to die. I am stunned into silence. It is unthinkable. She has a hypoplastic heart and soon they will stop giving her the medicine that's keeping her heart going and she could live for another 30 minutes to 3 days. That's a lot of time to sit, wondering when your child might die.
When I sit down moments later to eat my sandwich a surgeon arrives to let some parents know that the operation was successful and their baby is doing well. There are many tears. I don't know these people and I cry for them and think about Patricia and her little Mahalia and I cry for them too.
We are staying at a friend's home on 61st St. in Manhattan. Oddly, I'm antsy in my own house. It feels strange to be there without him. He and I spent so much time there together, watching crap TV, knitting and I want him to be home with me now. I am thankful to be staying in the apartment. It's like a little vacation amidst all this insanity.
I walked to the train at Columbus circle. I ordered a coffee at Starbucks. Today, he is 10 days old and I suddenly have a vivid memory of standing in front of a hardware store in Brooklyn with Mahalia in a sling, explaining to a stranger that she is 10 days old. I kiss her head and the Brooklynite tells me not to spoil her too much. I've held Dezi two times and kissed him once.
I feel like an alien walking down the street. I just had a baby and besides my milk boobs and a few stitches that are out of site, I've got nothing to show for it. I am all heart and no brain. I eavesdrop on a conversation between 6 or 7 very blond business women in Starbucks. One of them is telling the others about using her miles to get a hotel room in Rome. I want to punch her.
Dezi was uncomfortable all day yesterday and his breathing was accelerated. The surgeons order a chest x-ray because they're concerned that his patch is too weak in some areas. It's called de-hissing. I don't know why. If true, he'll need another surgery. The x-ray is inconclusive. They'll do another tomorrow.
I picked up the car from the parking lot. It has a flat tire. Funny enough, we brought the car to the Firestone Shop two days ago with a flat tire. They fixed it with a patch. Apparently the patch de-hissed. In the darkest part of my mind I think of patches de-hissing and how patches are generally temporary measures to repair something and I worry about Dezi's patch and his future. This kind of thinking doesn't help me and I force myself back around. If we are only lucky with one patch this week let it be Dezi's.
At the hospital I see Patricia, my recovery roommate. I ask about her daughter Mahalia and she tells me that Mahalia is going to die. I am stunned into silence. It is unthinkable. She has a hypoplastic heart and soon they will stop giving her the medicine that's keeping her heart going and she could live for another 30 minutes to 3 days. That's a lot of time to sit, wondering when your child might die.
When I sit down moments later to eat my sandwich a surgeon arrives to let some parents know that the operation was successful and their baby is doing well. There are many tears. I don't know these people and I cry for them and think about Patricia and her little Mahalia and I cry for them too.
Tuesday, March 17, 2009
Happiness Is a Warm Baby
I asked the social worker for some kind of checklist. Extubation/Breathing Stabilization/Tube Feeding/Nippling, etc. etc.
I ask the nurses the same questions over and over. I can't keep any of it straight. They removed the tape and the ventilator. The ventilator sat covered in plastic when I arrived at the hospital and I felt a little excited seeing it there, unattached to my little boy. They removed a direct line into his umbilical cord from which the nurses draw blood several times a day. Hooray. They disconnected a tube that enters into his mouth and goes directly to his delicate little stomach. They are going to see how he does without it constantly suctioning extra gunk from his gut.
Tomorrow at 1:30 they will try to feed the little dude with my breast milk. My freezer is already jam packed with milk. It's day 8. He's been fed thru a tube in his foot until now. TPN, my Dr. daddy tells me, is a complete nutritional food. It contains all the vitamins and calories he needs to live. There's another bag and another IV for lipids--fats to make him chubby and to smart him up.
So much information, so many people introducing themselves to me. This kid is a rock star. He's reaching his milestones before anyone thinks he should. He's kicking ass. He's breaking free from his tubes. He's the Boss.
I sniffed him while I held him. He does not smell like me and I long to tuck him in my shirt and sleep with him. Sweet, sweet boy. I cannot wait.
Sunday, March 15, 2009
A few friends stopped by to meet Desmond this weekend and I could see in their eyes the shock of the NICU--the preemies, the beeping, the sterility of the place. My own feelings of the place have changed drastically after only being there for one week. It is a place of stunning emotion; a place that can be overwhelming and scary one day and the next day extremely calm and peaceful. It is a place filled with little beings whose survival instincts pull them through the most unimaginable circumstances and a place where tiny lives end before they've even begun. It is also an intensive place of love. Parents and grandparents, siblings and friends come to rally for these little folks and the support and love is palpable.
Respiration, I've learned, is a greatly complicated process. It's a wonder that any of us can breathe, really. There are numbers, so many numbers, that the Drs. and nurses throw at me on a daily basis. I like to pretend I'm listening and I am, but only to hear them say, "everything looks really good."
Dezi is fighting like a champion. Today's attending physician said that his "course has been totally uncomplicated and he's doing great." He's been intubated since minute one of life and we've never seen his face without tape covering most of it. The tube is supposed to come out in the morning. And (I'm afraid to write it here, to get my hopes up) the day after extubation we will get to hold him. My heart may explode.
I have had some unsteady moments. The tears come unexpectedly and I can easily go to a dark place. Part of it may be hormones. I explained to Shane that I'm feeling them and that it's like keeping barking dogs at bay. Feelings of panic come and go. They're less threatening now, after having been thru it one time with Mahalia but aggravating all the same. The tube in his face prevents him from making any sound. This has been the hardest part. When he cries, there is no sound and there is nothing that Shane and I can do to help him. It makes me feel hollow. I have to call the nurse and go give myself a break from staring at his little body by going to the lounge. The next day I get the news of extubation and it makes me feel elated.
Up and down, up and down. I can't say we're enjoying the ride but we're holding each other down and are feeling a little more like we're definitely going to get through it.
Hopefully, these will be the last photos with tape on his face.
Respiration, I've learned, is a greatly complicated process. It's a wonder that any of us can breathe, really. There are numbers, so many numbers, that the Drs. and nurses throw at me on a daily basis. I like to pretend I'm listening and I am, but only to hear them say, "everything looks really good."
Dezi is fighting like a champion. Today's attending physician said that his "course has been totally uncomplicated and he's doing great." He's been intubated since minute one of life and we've never seen his face without tape covering most of it. The tube is supposed to come out in the morning. And (I'm afraid to write it here, to get my hopes up) the day after extubation we will get to hold him. My heart may explode.
I have had some unsteady moments. The tears come unexpectedly and I can easily go to a dark place. Part of it may be hormones. I explained to Shane that I'm feeling them and that it's like keeping barking dogs at bay. Feelings of panic come and go. They're less threatening now, after having been thru it one time with Mahalia but aggravating all the same. The tube in his face prevents him from making any sound. This has been the hardest part. When he cries, there is no sound and there is nothing that Shane and I can do to help him. It makes me feel hollow. I have to call the nurse and go give myself a break from staring at his little body by going to the lounge. The next day I get the news of extubation and it makes me feel elated.
Up and down, up and down. I can't say we're enjoying the ride but we're holding each other down and are feeling a little more like we're definitely going to get through it.
Hopefully, these will be the last photos with tape on his face.
Friday, March 13, 2009
There Goes My Heart
The anesthesiologists begin the transport to the operating room. The man with his back to the camera used a hand operated ventilator to help him breathe on the journey. His name is Dr. Wong. The surgeon referred to him as a respiratory magician. We are lucky to be at this institution.
It really did feel like they took my heart.
A Shift Of Heart
It is with great relief that I'm able to write that the surgery is done. It is done and Dezi can begin healing. The surgery took around 5 hours and the waiting was difficult.
Our boy had his stomach, small intestine, colon, spleen and tip of the liver in his chest cavity. He barely had any diaphragmatic tissue and they created a diaphragm from gortex, stitching it to the existing tissue and securing it in place by knotting it to the ribs. They did all of this using little cameras which were inserted in the tiniest of incisions that will heal beautifully, leaving little to no evidence of ever having been there. With all of those organs up there, his heart had deviated and smooshed to the far right of his chest cavity. It will start moving over, slowly back to where it belongs.
Holy shit, right? I've been thinking this surgery for 20 weeks and am still shocked by the reality of how his little body formed.
Dezi's surgeon, Dr. Aspelund, is my new hero. She is European and appears to be close to me in age. I'm humbled and grateful and awed by the work that she does.
My own heart feels different now too. With news of smooth surgery, I felt a great weight lift from my body--the letting go of months of anxiety. And while the journey ahead is still far from over, I feel like I can be fully present to help this little fighter on his road to recovery.
Our boy had his stomach, small intestine, colon, spleen and tip of the liver in his chest cavity. He barely had any diaphragmatic tissue and they created a diaphragm from gortex, stitching it to the existing tissue and securing it in place by knotting it to the ribs. They did all of this using little cameras which were inserted in the tiniest of incisions that will heal beautifully, leaving little to no evidence of ever having been there. With all of those organs up there, his heart had deviated and smooshed to the far right of his chest cavity. It will start moving over, slowly back to where it belongs.
Holy shit, right? I've been thinking this surgery for 20 weeks and am still shocked by the reality of how his little body formed.
Dezi's surgeon, Dr. Aspelund, is my new hero. She is European and appears to be close to me in age. I'm humbled and grateful and awed by the work that she does.
My own heart feels different now too. With news of smooth surgery, I felt a great weight lift from my body--the letting go of months of anxiety. And while the journey ahead is still far from over, I feel like I can be fully present to help this little fighter on his road to recovery.
Thursday, March 12, 2009
Wednesday, March 11, 2009
The Time Is Here
Surgery will happen tomorrow (Thursday) at Noon. Please pray for us and for baby Desmond.
At 21%
As I stood next to him for the first time yesterday, big juicy tears rolled out of my eyeballs. He has a strong presence, even for a little person who is only 24 hours old. I feel like it is brave, what he is doing and I think to myself that I've never done anything as brave as that in my whole life, even if he isn't aware of his strength. The NICU nurse seems uncomfortable with my crying which fully surprises me. She tries to comfort me by saying something like, "he's not as sick as these other babies." Then I start feeling sad about the other babies. Is it so out of the norm for a gal who has freshly delivered a baby and feels a little scared and helpless to shed a few tears?
I can feel my arms ache as I look at him. We won't be able to pick him up for some time, and it feels hard. There's a really lovely night nurse on duty, Catherine is her name. She is Irish, in her fifties and from the Bronx. She's been a pediatric nurse at this hospital since she was 20. At first, I was taken aback by her thick New Yorkese and abrupt manner but I spent some time with her last night and admired the way she spoke to Dezi and handled him. I went to bed, calm and reassured, knowing that he was in such confident hands.
During his first full day, they've weaned his oxygen intake down to 30%. You and I breathe room air which is 21%. So for a little guy who has his guts in his chest, 30% ain't bad. It's possible that his surgery will happen on Thursday. (breathe in, breathe out.)
There was a constant stream of people in and out of my room yesterday--surgeons, Drs., research fellows, social workers, nurse practitioners, lactation consultants. I start having moments of rage, answering questions and signing forms. Being polite starts getting on my nerves.
Mahalia and mom and dad and Shane come for a visit and Mahalia and I spent a couple of quiet hours, cuddling on my bed, watching Curious George. That was my favorite part of the day. She is being a good girl albeit slightly sassy. It's to be expected as it's often my go to emotion during times of stress. She strutted around the hospital in quite a getup --red cable knit tights, her fancy sparkly pink sneakers and (and this is the piece de resistance) her pink polka dotted skirted bathing suit. I told some of my friends that she looked like a drunk figure skater. In an outfit like that, she demanded a lot of attention and when one nurse stopped to say, "You look so cute! People tell you that all the time, don't they?" She quietly and factually responded with, "they say beautiful."
I'm tired of being bossed around by nurses on the recovery floor and I use the NICU, and Dezi's bedside as a place of respite. I woke early today, knowing that I'll be heading home or actually to New Jersey which is so close, yet so far from home, and started to get a little panicky. At the moment, the next few weeks seem highly implausible and unmanageable--getting here, having Mahalia, healing, being polite, etc. I suppose it means taking everything one day at a time (or one part of one day at one time. breathe in, breathe out.) I should remind myself that a week ago, delivering a child and getting through this week seemed highly implausible and unmanageable, and here I am, alive, breathing at 21%.
I can feel my arms ache as I look at him. We won't be able to pick him up for some time, and it feels hard. There's a really lovely night nurse on duty, Catherine is her name. She is Irish, in her fifties and from the Bronx. She's been a pediatric nurse at this hospital since she was 20. At first, I was taken aback by her thick New Yorkese and abrupt manner but I spent some time with her last night and admired the way she spoke to Dezi and handled him. I went to bed, calm and reassured, knowing that he was in such confident hands.
During his first full day, they've weaned his oxygen intake down to 30%. You and I breathe room air which is 21%. So for a little guy who has his guts in his chest, 30% ain't bad. It's possible that his surgery will happen on Thursday. (breathe in, breathe out.)
There was a constant stream of people in and out of my room yesterday--surgeons, Drs., research fellows, social workers, nurse practitioners, lactation consultants. I start having moments of rage, answering questions and signing forms. Being polite starts getting on my nerves.
Mahalia and mom and dad and Shane come for a visit and Mahalia and I spent a couple of quiet hours, cuddling on my bed, watching Curious George. That was my favorite part of the day. She is being a good girl albeit slightly sassy. It's to be expected as it's often my go to emotion during times of stress. She strutted around the hospital in quite a getup --red cable knit tights, her fancy sparkly pink sneakers and (and this is the piece de resistance) her pink polka dotted skirted bathing suit. I told some of my friends that she looked like a drunk figure skater. In an outfit like that, she demanded a lot of attention and when one nurse stopped to say, "You look so cute! People tell you that all the time, don't they?" She quietly and factually responded with, "they say beautiful."
I'm tired of being bossed around by nurses on the recovery floor and I use the NICU, and Dezi's bedside as a place of respite. I woke early today, knowing that I'll be heading home or actually to New Jersey which is so close, yet so far from home, and started to get a little panicky. At the moment, the next few weeks seem highly implausible and unmanageable--getting here, having Mahalia, healing, being polite, etc. I suppose it means taking everything one day at a time (or one part of one day at one time. breathe in, breathe out.) I should remind myself that a week ago, delivering a child and getting through this week seemed highly implausible and unmanageable, and here I am, alive, breathing at 21%.
Tuesday, March 10, 2009
Saturday, February 28, 2009
The countdown is here. I grunt and moan in bed as I heave my body from left side to right, right to left, left to right. I sound like a pig at the Mercer County Fair.
My nighttime choreography goes a little like this--drift off 8 counts, shift, shift, shift, pee. Return to bed and nudge Shane for snoring, silently blaming him for my inability to sleep. Repeat 6 times and then wake, chipper for handling of breakfast and dressing of 2-yr old.
My nighttime choreography goes a little like this--drift off 8 counts, shift, shift, shift, pee. Return to bed and nudge Shane for snoring, silently blaming him for my inability to sleep. Repeat 6 times and then wake, chipper for handling of breakfast and dressing of 2-yr old.
Saturday, February 21, 2009
#2
Fortunately, I had never experienced any sort of insomnia until I was pregnant with Mahalia. And shockingly, with all the surprises of this pregnancy, I've been sleeping like a rock until now. Now sleep occurs in weird fits. A friend described to me once how her feelings about sleep had changed post-baby. She is a poet and had thought of her sleeping pattern in terms of sentence structure. I can't remember exactly her words but it had to do with nighttime being like a period--day is done, I'm sleeping for this period of time and will wake up rested. My nights are now filled with commas and parentheses, exclamations and interjections. I wake up in the middle of a full thought.
Mahalia is on day 4 of fever. The Dr. reassures us that her lungs are clear and that this is only a nasty virus. I'm sure viruses are nastier in this city than anywhere else, everything in these five boroughs is full on. With only two weeks before having a baby with compromised lungs, I was getting a little panicky about also having a two year old with pneumonia. She crawls into bed with us at night and tucks her feverish little body right into my ever increasing curves. Nose to nose, her hot little breath keeps me awake. Whoonit is also turning flips inside of me and it suddenly occurs to me for the first time (no lie) that I'm about to have two children.
I stumble to the toilet and linger there while I have this realization. I'm pretty sure I laughed out loud on the toilet. Two kids, huh? What am I doing? How does that actually work? We, as a little family, have worked out a fairly reasonable routine and we're going to throw another one into the mix? How do I get two kids into the bug? Where will two little bodies fit in our bed in the morning?
I realize too that I've been so fixated on hospital time and surgery that I haven't been able to think about the time beyond. I say I'd like to work when my body heals, but really? We talk about moving to Denver sometime later, but really? There must be a word for the brain phenomena I find myself having. It's tricky to articulate but it's sort of like stumbling upon a giant wall that you can't see over or around. You know that there is another side but in this breath, it seems impossible. In these moments, I know that it's a weird blessing how laid back Shane and I both are. It's not great for things like, well, paying bills, and getting to places on time (one of us is better at this than the other.) But it sure pays off in times of uncertainty. I see this reflected in little Miss MayMay who handles transitions in a surprisingly easy going way and I am thankful. We will have this little baby and deal with it because we have to. All other decisions, for now, can wait.
Fortunately, I had never experienced any sort of insomnia until I was pregnant with Mahalia. And shockingly, with all the surprises of this pregnancy, I've been sleeping like a rock until now. Now sleep occurs in weird fits. A friend described to me once how her feelings about sleep had changed post-baby. She is a poet and had thought of her sleeping pattern in terms of sentence structure. I can't remember exactly her words but it had to do with nighttime being like a period--day is done, I'm sleeping for this period of time and will wake up rested. My nights are now filled with commas and parentheses, exclamations and interjections. I wake up in the middle of a full thought.
Mahalia is on day 4 of fever. The Dr. reassures us that her lungs are clear and that this is only a nasty virus. I'm sure viruses are nastier in this city than anywhere else, everything in these five boroughs is full on. With only two weeks before having a baby with compromised lungs, I was getting a little panicky about also having a two year old with pneumonia. She crawls into bed with us at night and tucks her feverish little body right into my ever increasing curves. Nose to nose, her hot little breath keeps me awake. Whoonit is also turning flips inside of me and it suddenly occurs to me for the first time (no lie) that I'm about to have two children.
I stumble to the toilet and linger there while I have this realization. I'm pretty sure I laughed out loud on the toilet. Two kids, huh? What am I doing? How does that actually work? We, as a little family, have worked out a fairly reasonable routine and we're going to throw another one into the mix? How do I get two kids into the bug? Where will two little bodies fit in our bed in the morning?
I realize too that I've been so fixated on hospital time and surgery that I haven't been able to think about the time beyond. I say I'd like to work when my body heals, but really? We talk about moving to Denver sometime later, but really? There must be a word for the brain phenomena I find myself having. It's tricky to articulate but it's sort of like stumbling upon a giant wall that you can't see over or around. You know that there is another side but in this breath, it seems impossible. In these moments, I know that it's a weird blessing how laid back Shane and I both are. It's not great for things like, well, paying bills, and getting to places on time (one of us is better at this than the other.) But it sure pays off in times of uncertainty. I see this reflected in little Miss MayMay who handles transitions in a surprisingly easy going way and I am thankful. We will have this little baby and deal with it because we have to. All other decisions, for now, can wait.
Thursday, February 12, 2009
MARCH 9, 2009
Today we set the date for induction.
I like the date 03.09.09. It makes me think of reading Greek Mythology with Mrs. Springer in High School. She told us that there is luck related to the number 3. I'm excited because there's an end in sight. He is a chunk. He's in the 77% for weight. Those of you who knew Mahalia as an infant won't be surprised by this statistic. His head circumference is above the 95%. I've not been able to think of much else besides this baby and his imperfection. While getting up and going to work has provided me with a much needed routine, I find myself extra spacey while there--calling kids by their sibling's names or forgetting names all together.
Mahalia has named this baby Whoonit. Her first choice was Rachel but she'll be the first to tell you that, "daddy says Rachel is a girl's name so I named him Whoonit." Every once in a while I say, "Mahalia, mommy and daddy might decide to name him something else besides Whoonit." It's an attempt to soften the blow when we tell her his real name. We talk in circles about names.
My brain is so busy thinking about stuff. The brain chatter is incessant. I find that the chatter makes the most sense when I'm working on a knitting project. I've made lots of little knitted items--hats (I cast on extra stitches to accomodate the large head situation I mentioned above), booties, a poncho, some pants, a sweater. I've been thinking of the big mammajamma knitting project I'll work on when Whoonit is in the NICU.
Ahhhh, the NICU. We took a tour of the NICU last week. It was mind boggling. There are so many machines and tubes and Filipino nurses. There were tiny naked babies under heating units. One baby's chest was vibrating very quickly and I ask the Dr. if these babies are in pain. I'm holding back tears the whole time we're looking around. I don't know if the tears are for the babies or for self pity or from fear. Most likely, the tears are a combination of all these things and stress and hormones. The next day at work I start crying at a staff meeting when somebody asks me how I'm feeling. It's totally humiliating and embarrassing.
I shouted at a lady on the train. The seating situation pisses me off on a daily basis and is turning me into a racist. I scan the train car as it pulls into the station for any african americans because african americans stand up for pregnant ladies. Unfortunately, my train --the B--is coming from Brighton Beach, land of the freshly emigrated Russian folks. Russian people do not get up for pregnant ladies. That said, as I was standing on the rush hour train, an old Russian lady came on and started banging me repeatedly in the back. Out of nowhere I shout, "Where are you trying to go? You're going to knock me over." Her only response was, "No. No. I am not." I didn't consciously make the decision to say that out loud. It just emanated from somewhere deep within. It feels great and I make a note to let that voice speak more often.
I tripped on a branch on the walk to the train today and totally bit the dust. I landed only inches from a mud puddle. I wish I could see a replay of the fall. I'm pretty sure I was heading face down but somehow I ended up on my side to avoid landing on my belly. You'll be surprised to learn (just kidding) that I cried after I got up. I felt so discombobulated and scared. Tonight my arm hurts. I felt my amniotic fluid sloshing around when I fell. My polyhydramniosis (excess amniotic fluid) condition makes my belly so hard but it felt like a giant balloon when I landed on the ground.
I'm dying to know what will happen tomorrow. It's windy here in NYC and two people got killed from shit flying thru the air. Bam. One second you're alive, brain chattering away, and the next moment you're dead. Holy crap.
Today we set the date for induction.
I like the date 03.09.09. It makes me think of reading Greek Mythology with Mrs. Springer in High School. She told us that there is luck related to the number 3. I'm excited because there's an end in sight. He is a chunk. He's in the 77% for weight. Those of you who knew Mahalia as an infant won't be surprised by this statistic. His head circumference is above the 95%. I've not been able to think of much else besides this baby and his imperfection. While getting up and going to work has provided me with a much needed routine, I find myself extra spacey while there--calling kids by their sibling's names or forgetting names all together.
Mahalia has named this baby Whoonit. Her first choice was Rachel but she'll be the first to tell you that, "daddy says Rachel is a girl's name so I named him Whoonit." Every once in a while I say, "Mahalia, mommy and daddy might decide to name him something else besides Whoonit." It's an attempt to soften the blow when we tell her his real name. We talk in circles about names.
My brain is so busy thinking about stuff. The brain chatter is incessant. I find that the chatter makes the most sense when I'm working on a knitting project. I've made lots of little knitted items--hats (I cast on extra stitches to accomodate the large head situation I mentioned above), booties, a poncho, some pants, a sweater. I've been thinking of the big mammajamma knitting project I'll work on when Whoonit is in the NICU.
Ahhhh, the NICU. We took a tour of the NICU last week. It was mind boggling. There are so many machines and tubes and Filipino nurses. There were tiny naked babies under heating units. One baby's chest was vibrating very quickly and I ask the Dr. if these babies are in pain. I'm holding back tears the whole time we're looking around. I don't know if the tears are for the babies or for self pity or from fear. Most likely, the tears are a combination of all these things and stress and hormones. The next day at work I start crying at a staff meeting when somebody asks me how I'm feeling. It's totally humiliating and embarrassing.
I shouted at a lady on the train. The seating situation pisses me off on a daily basis and is turning me into a racist. I scan the train car as it pulls into the station for any african americans because african americans stand up for pregnant ladies. Unfortunately, my train --the B--is coming from Brighton Beach, land of the freshly emigrated Russian folks. Russian people do not get up for pregnant ladies. That said, as I was standing on the rush hour train, an old Russian lady came on and started banging me repeatedly in the back. Out of nowhere I shout, "Where are you trying to go? You're going to knock me over." Her only response was, "No. No. I am not." I didn't consciously make the decision to say that out loud. It just emanated from somewhere deep within. It feels great and I make a note to let that voice speak more often.
I tripped on a branch on the walk to the train today and totally bit the dust. I landed only inches from a mud puddle. I wish I could see a replay of the fall. I'm pretty sure I was heading face down but somehow I ended up on my side to avoid landing on my belly. You'll be surprised to learn (just kidding) that I cried after I got up. I felt so discombobulated and scared. Tonight my arm hurts. I felt my amniotic fluid sloshing around when I fell. My polyhydramniosis (excess amniotic fluid) condition makes my belly so hard but it felt like a giant balloon when I landed on the ground.
I'm dying to know what will happen tomorrow. It's windy here in NYC and two people got killed from shit flying thru the air. Bam. One second you're alive, brain chattering away, and the next moment you're dead. Holy crap.
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