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.
Monday, March 30, 2009
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
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