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Showing posts with label Denver Children's Hospital. Show all posts
Showing posts with label Denver Children's Hospital. Show all posts
Friday, April 15, 2011
Wednesday, May 13, 2009
The Hospital Gown, Fashion Malady, Worries Would-Be Redesigners Sick
Posted by Kim:
How do you feel?
On May 11, 2009, the following article appeared in the Wall Street Journal and I am shocked by the newsflash that it appears to bring to light. Doesn't everyone know that the hospital gown is not only a fashion concern, but a demeaning, dysfunctional product that succeeds only making people feel vulnerable and out of control of their care? After all, this is what BINSI has been saying for years now. It is out passion and opinion that BINSI Labor and Birth Apparel directly affects a woman’s stress level by giving her comfort, control, and empowerment during the birthing process. Most women in childbirth are healthy and need to be active - so why shouldn't they look and feel that way?
While I think that our apparel can be used in all aspects of women's care, we are not a solution for men while they need to be hospitalized or in the care of a physician so there is some disconnect there. However, the gown in general is so demeaning that I can see why men may choose not to pursue care or additional opinions when this path also means they would have to "wear a dress". Because in their minds that is probably how they see it and do we even have to talk about how much it bothers men (and women) to feel completely out of control of their situation and at the mercy of their doctor?
You may have read my first son's birth story, and if you did you will remember that he spent a few weeks in the NICU at The Children's Hospital of Denver. Well, one of the many things I learned while Connor was hospitalized, was that as the parent I (or the patient in other situations) ultimately was the person responsible for my child's care. I NEEDED to manage his care. It is not disrespectful to ask a million questions or to even question the doctor or nurse before a procedure or before they begin an injection. Not necessarily because they are inadequate, uneducated or unprofessional, but because they are human, many times overworked and stressed. For instance, because of the discovery of Connor's Hirschsprung's disease, he had to have an enema before he was discharge to discover the severity of the disease. The first time the NICU nurse escorted us down to radiology, explained everything that was going to happen and what the procedure was going to be like. Because Connor was unable to poop, they did not use Barium for the procedure as he would not be able to expell it. Three months later, we had to go back for the exact same procedure just before his surgery to verify that everything was the same. This time I was alone and as the nurse prepared for the procedure I asked her what was in the bag that she was prepping and she said Barium. I thought, that seems odd, isn't that radioactive? How will we get that out? So I asked her, how will we get that out of Connor, as I am sure that is not the same substance they used last time. What did she say... "He will poop it out." WHAT?!!! Didn't she even look at Connor's chart, that's why he is here, HE CAN'T POOP!!! She gracefully went into the other room, probably discussed this with someone else and brought back a differnt bag. Now if I hadn't asked her, would they have used Barium on a baby that can't poop thinking he would poop it out? Not sure, but I was VERY glad I interjected and second guessed her decision.
Anyway, my point here is that wearing the gown is not only a fashion fauxpas, it is a vulnerable, control, modesty, religious, self-respect thing. What the perfect solution is for all situations, I am not sure, but I definitely think BINSI can be a solution for women's care and at least is a solution outside the box. We also say "Down with the Gown."
The Hospital Gown, Fashion Malady, Worries Would-Be Redesigners Sick
By LUCETTE LAGNADO
RALEIGH, N.C. -- The traditional American hospital gown -- flimsy in front, open to the breeze in the back -- has been around about as long as the Band-Aid. If anything, it has changed less.
The one-size-fits-none garment remains one of the least loved aspects of American medicine. A bare-bottomed Jack Nicholson wore the most common model, open in back with a couple of ties, to comic effect in the 2003 movie "Something's Gotta Give."
Medical historians believe the current gown evolved from nightshirts patients wore in hospitals in the 1800s that were slit open in the back. Variations of the current style have been in use since at least the 1920s.
"Nobody is happy with it," says Blanton Godfrey, dean of the College of Textiles of North Carolina State University. "It is amazing -- we have created a product nobody likes."
Nobody, perhaps, except some hospital purchasing managers. Patient gowns are now a $76 million market, according to Premier Inc., an alliance of hospitals that negotiates to buy supplies and works with hospitals on quality improvement. Traditional models cost as little as $2 to $3 apiece, and can be washed and reworn dozens of times.
For the past 2½ years, with about a quarter of a million dollars in funding from the Robert Wood Johnson Foundation in Princeton, N.J., a small team of students and faculty at the College of Textiles has been working to update the traditional hospital gown. "It is a symbol of what needs to change in health care," says Rosemary Gibson, the RWJ foundation senior program officer who devised the "Down With the Gown" initiative.
The college has sponsored six focus groups, five at hospitals in North Carolina and one in Massachusetts. The team has also met with or sought comments from so-called "stakeholders" who would have a role in making or selling the new gowns.
"We thought that it would be a much easier problem to tackle," says Prof. Traci Lamar, who has been leading the effort for the College of Textiles.
In a drawer behind her desk at the foundation, Ms. Gibson keeps an especially ragged specimen of a gown salvaged from a New England hospital. It has snaps which she struggles to snap and a hole in it from wear and tear. When Ms. Gibson puts it on over her clothes, it is clear it doesn't cover all of her. "It is as if the patient is an object -- can't we develop a more respectful garment?" she says.
Ms. Gibson says she has held it up in front of audiences of 1,000 people to make her point: The
gown has to go.
In November 2006, the foundation decided to escalate its effort by awarding the College of Textiles a $236,110 grant to work on the problem -- not just the design, but production and marketing. "It is not only coming up with a prototype," Ms. Gibson explains,
There have been other efforts to design new gowns. A decade ago, Hackensack University Medical Center in Hackensack, N.J., hired designer Nicole Miller to reinterpret its gowns. Her colorful iterations, festooned with drawings of stethoscopes, syringes and other medical icons, are about double the usual price; the hospital says they are worth it.
In 2004, Maine Medical Center in Portland introduced a modest floor-length "sarong" for its Muslim patients who were so distressed with the usual gown they were missing appointments. A seamstress whipped up the new design, hospital officials said.
But in most American hospitals, the old gown design still dominates. Bud Konheim, CEO of Nicole Miller Ltd., said his fashion brand is "dying" to do more of them. But despite talks with several institutions, Hackensack remains the lone large client.
Michael Georgulis, a vice president at Premier Inc., the nonprofit alliance of 2,100 American hospitals, thinks the traditional gown has suffered a bum rap. In addition to being inexpensive, its easy-access design "works well" in emergencies, he says. "Given all the challenges facing hospitals and health care," aren't there more pressing problems worth tackling? he asks.
Prof. Lamar's team is undeterred. The group, which includes a Ph.D. candidate who used to work for Victoria's Secret and a professor specializing in textile design and product development, gathers to thrash out possible solutions. On a balmy April afternoon, the meeting gets off to a hopeful start. The team is brimming with ideas.
How about a gown with a handy pocket that could accommodate iPods and cellphones? Maybe raglan sleeves that would be loose and stylish? Should they try for a V-neckline instead of the banal scoop-neck? But that still doesn't get to the heart of the problem. What sort of design would revolutionize the gown and what kind of fasteners should hold it together: Velcro? Snaps? The familiar cloth ties?
Prof. Lamar holds up two bibs with Velcro-style closures that belong to her infant daughter. They have been laundered frequently and haven't held up. "I would not recommend it as a solution," she says firmly.
One of the team-members brings out a small mannequin and places it on the table. She wraps a gown around it; ideas begin to flow.
There's talk about a kimono-type gown. Another iteration would wrap 1½ times around the body for a more snug, precise fit. "I keep thinking of a wrap dress," says Leslie Hatch, the Victoria's Secret alumna. "You wrap it to fit your body."
The wrap approach looks appealing on the little mannequin. But then, team member Meryem Uluskan, a master's degree candidate, interjects: "If a patient has broken bones, and they don't need to be moved," she asks, how can they be put in a fitted wrap?
The group seems briefly stumped.
Prof. Lamar's team unveiled some of its new ideas at a recent in-house fashion show, displaying gowns with very wide, raglan sleeves, deep V-necklines, a pocket, as well as the 1½ wrap that they had envisioned some weeks earlier.
Dean Godfrey is hoping that these design ideas can be developed into something practical. "We are not in it for fun and games," he says. "We are in it to create products that end up in the market."
How do you feel?
On May 11, 2009, the following article appeared in the Wall Street Journal and I am shocked by the newsflash that it appears to bring to light. Doesn't everyone know that the hospital gown is not only a fashion concern, but a demeaning, dysfunctional product that succeeds only making people feel vulnerable and out of control of their care? After all, this is what BINSI has been saying for years now. It is out passion and opinion that BINSI Labor and Birth Apparel directly affects a woman’s stress level by giving her comfort, control, and empowerment during the birthing process. Most women in childbirth are healthy and need to be active - so why shouldn't they look and feel that way?
While I think that our apparel can be used in all aspects of women's care, we are not a solution for men while they need to be hospitalized or in the care of a physician so there is some disconnect there. However, the gown in general is so demeaning that I can see why men may choose not to pursue care or additional opinions when this path also means they would have to "wear a dress". Because in their minds that is probably how they see it and do we even have to talk about how much it bothers men (and women) to feel completely out of control of their situation and at the mercy of their doctor?
You may have read my first son's birth story, and if you did you will remember that he spent a few weeks in the NICU at The Children's Hospital of Denver. Well, one of the many things I learned while Connor was hospitalized, was that as the parent I (or the patient in other situations) ultimately was the person responsible for my child's care. I NEEDED to manage his care. It is not disrespectful to ask a million questions or to even question the doctor or nurse before a procedure or before they begin an injection. Not necessarily because they are inadequate, uneducated or unprofessional, but because they are human, many times overworked and stressed. For instance, because of the discovery of Connor's Hirschsprung's disease, he had to have an enema before he was discharge to discover the severity of the disease. The first time the NICU nurse escorted us down to radiology, explained everything that was going to happen and what the procedure was going to be like. Because Connor was unable to poop, they did not use Barium for the procedure as he would not be able to expell it. Three months later, we had to go back for the exact same procedure just before his surgery to verify that everything was the same. This time I was alone and as the nurse prepared for the procedure I asked her what was in the bag that she was prepping and she said Barium. I thought, that seems odd, isn't that radioactive? How will we get that out? So I asked her, how will we get that out of Connor, as I am sure that is not the same substance they used last time. What did she say... "He will poop it out." WHAT?!!! Didn't she even look at Connor's chart, that's why he is here, HE CAN'T POOP!!! She gracefully went into the other room, probably discussed this with someone else and brought back a differnt bag. Now if I hadn't asked her, would they have used Barium on a baby that can't poop thinking he would poop it out? Not sure, but I was VERY glad I interjected and second guessed her decision.
Anyway, my point here is that wearing the gown is not only a fashion fauxpas, it is a vulnerable, control, modesty, religious, self-respect thing. What the perfect solution is for all situations, I am not sure, but I definitely think BINSI can be a solution for women's care and at least is a solution outside the box. We also say "Down with the Gown."
The Hospital Gown, Fashion Malady, Worries Would-Be Redesigners Sick
By LUCETTE LAGNADO
RALEIGH, N.C. -- The traditional American hospital gown -- flimsy in front, open to the breeze in the back -- has been around about as long as the Band-Aid. If anything, it has changed less.
The one-size-fits-none garment remains one of the least loved aspects of American medicine. A bare-bottomed Jack Nicholson wore the most common model, open in back with a couple of ties, to comic effect in the 2003 movie "Something's Gotta Give."
Medical historians believe the current gown evolved from nightshirts patients wore in hospitals in the 1800s that were slit open in the back. Variations of the current style have been in use since at least the 1920s.
"Nobody is happy with it," says Blanton Godfrey, dean of the College of Textiles of North Carolina State University. "It is amazing -- we have created a product nobody likes."
Nobody, perhaps, except some hospital purchasing managers. Patient gowns are now a $76 million market, according to Premier Inc., an alliance of hospitals that negotiates to buy supplies and works with hospitals on quality improvement. Traditional models cost as little as $2 to $3 apiece, and can be washed and reworn dozens of times.
For the past 2½ years, with about a quarter of a million dollars in funding from the Robert Wood Johnson Foundation in Princeton, N.J., a small team of students and faculty at the College of Textiles has been working to update the traditional hospital gown. "It is a symbol of what needs to change in health care," says Rosemary Gibson, the RWJ foundation senior program officer who devised the "Down With the Gown" initiative.
The college has sponsored six focus groups, five at hospitals in North Carolina and one in Massachusetts. The team has also met with or sought comments from so-called "stakeholders" who would have a role in making or selling the new gowns.
"We thought that it would be a much easier problem to tackle," says Prof. Traci Lamar, who has been leading the effort for the College of Textiles.
In a drawer behind her desk at the foundation, Ms. Gibson keeps an especially ragged specimen of a gown salvaged from a New England hospital. It has snaps which she struggles to snap and a hole in it from wear and tear. When Ms. Gibson puts it on over her clothes, it is clear it doesn't cover all of her. "It is as if the patient is an object -- can't we develop a more respectful garment?" she says.
Ms. Gibson says she has held it up in front of audiences of 1,000 people to make her point: The
gown has to go.In November 2006, the foundation decided to escalate its effort by awarding the College of Textiles a $236,110 grant to work on the problem -- not just the design, but production and marketing. "It is not only coming up with a prototype," Ms. Gibson explains,
There have been other efforts to design new gowns. A decade ago, Hackensack University Medical Center in Hackensack, N.J., hired designer Nicole Miller to reinterpret its gowns. Her colorful iterations, festooned with drawings of stethoscopes, syringes and other medical icons, are about double the usual price; the hospital says they are worth it.
In 2004, Maine Medical Center in Portland introduced a modest floor-length "sarong" for its Muslim patients who were so distressed with the usual gown they were missing appointments. A seamstress whipped up the new design, hospital officials said.
But in most American hospitals, the old gown design still dominates. Bud Konheim, CEO of Nicole Miller Ltd., said his fashion brand is "dying" to do more of them. But despite talks with several institutions, Hackensack remains the lone large client.
Michael Georgulis, a vice president at Premier Inc., the nonprofit alliance of 2,100 American hospitals, thinks the traditional gown has suffered a bum rap. In addition to being inexpensive, its easy-access design "works well" in emergencies, he says. "Given all the challenges facing hospitals and health care," aren't there more pressing problems worth tackling? he asks.
Prof. Lamar's team is undeterred. The group, which includes a Ph.D. candidate who used to work for Victoria's Secret and a professor specializing in textile design and product development, gathers to thrash out possible solutions. On a balmy April afternoon, the meeting gets off to a hopeful start. The team is brimming with ideas.
How about a gown with a handy pocket that could accommodate iPods and cellphones? Maybe raglan sleeves that would be loose and stylish? Should they try for a V-neckline instead of the banal scoop-neck? But that still doesn't get to the heart of the problem. What sort of design would revolutionize the gown and what kind of fasteners should hold it together: Velcro? Snaps? The familiar cloth ties?
Prof. Lamar holds up two bibs with Velcro-style closures that belong to her infant daughter. They have been laundered frequently and haven't held up. "I would not recommend it as a solution," she says firmly.
One of the team-members brings out a small mannequin and places it on the table. She wraps a gown around it; ideas begin to flow.
There's talk about a kimono-type gown. Another iteration would wrap 1½ times around the body for a more snug, precise fit. "I keep thinking of a wrap dress," says Leslie Hatch, the Victoria's Secret alumna. "You wrap it to fit your body."
The wrap approach looks appealing on the little mannequin. But then, team member Meryem Uluskan, a master's degree candidate, interjects: "If a patient has broken bones, and they don't need to be moved," she asks, how can they be put in a fitted wrap?
The group seems briefly stumped.
Prof. Lamar's team unveiled some of its new ideas at a recent in-house fashion show, displaying gowns with very wide, raglan sleeves, deep V-necklines, a pocket, as well as the 1½ wrap that they had envisioned some weeks earlier.
Dean Godfrey is hoping that these design ideas can be developed into something practical. "We are not in it for fun and games," he says. "We are in it to create products that end up in the market."
Thursday, February 19, 2009
A NICU Story Part II
Posted by Kim:
A continuation of yesterday's post, here are some more letters we wrote to Connor while he remained in the NICU. While our stint in the hospital was about to get worse, it was also the beginning of the answers to Connor's problems. Thank goodness for Denver's Children's Hospital!
Written by Kim
October 28, 2002
Dear Connor,
Today was a day filled with joy and concern. I was so excited to come to the hospital and see you today because I knew you would not need the bililights, which meant that I could hold you all day long. When I called Karen in the nursery last night she told me you had gained 16 grams. Dad and I were both VERY excited about that. When I came into the hospital this morning you took 23ccs from a bottle. I just knew it was going to be a good day. You laid in my arms all morning long, I couldn't bare to put you down. I just love it when you snuggle your head into my neck. You are the most beautiful and loving baby. Sometimes I can't believe you are mine. I often wonder how my life can be any more perfect. I have the greatest husband and the most wonderful son. We sat on the couch and read stories all day. We read about Old Yeller, Paul Bunyan, and Pecos Bill and of course we read your favorite book "Guess How Much I Love You." Later in the afternoon we had a wonderful visit with Aunt Kathy and your little friend Adrian. We had lunch on the floor and Adrian just stared at you. He can't wait until you start going over to his house to play. You two are going to have the greatest time growing up together.
When Mom and Grandma came back to the hospital to feed you at 5pm you weren't feeling very good. Dr Rosquist came to visit and we decided to go for a trip to Denver. You were the greatest little thing and got to ride in the ambulance with the nice nurses. I am sure it was very exciting. We are at Children's Hospital now and the nice doctors are looking you over. I knew we are going to figure out what is going on . They are going to fix it and you will soon be home with Mom and dad. We love you so much. Can you guess how much?
We love you all the way to the moon and back.
After a trip home to pick up Grandma Sarah and Paul we arrived at the hospital to find things spiraling down for Connor quite rapidly. It was kind of like watching a car accident. Everyone was rushing around quickly taking care of Connor and another critical baby that had just been born, but at the same time everything seemed to be moving in slow motion and the sound was drowned out by my mind wondering what was happening. The nurses were amazing,
truly like Mothers to me rather than clinical medical nurses. I will never forget seeing Connor's limp little body laying in the crib with the oxygen tent over his head. I just wanted to hold him, he needed to be held by his Mom! The sweetest nurse just stood by his side singing Amazing Grace and rubbing his little fingers. The Flight for Life team came to take the other baby to Denver and we were waiting for Connor's team to arrive. The LUH nurses kept taking Polaroid pictures of Connor and giving them to me. I didn't understand what was going on and I kept screaming inside of my head saying "Stop taking his picture" because I was thinking that they thought these might be his last pictures alive. In retrospect however, I wonder if they took the pictures so when we arrived at the hospital we would be able to identify Connor, because there was not room in the ambulance for us ride along with him. Everything was so scary and all I could think of was the worse case scenario. I kept praying and praying that Connor would be ok. Life couldn't be that cruel, God wouldn't separate me from my baby, he was going to live! I'll never forget the long drive to Denver Children's Hospital, following the ambulance wishing I could be in the ambulance with Connor.
October 29, 2002
Dear Connor,
Again today was filled with joy and concern. We woke up in our little parent sleep room somewhat refreshed and immediately rushed downstairs to see you. You are just so cute I can't take my eyes off of you.
Around lunch time Auntie Amy brought Grandma Sarah down to the hospital to see you. We were all staring at you and saying how you are the most beautiful baby we have ever seen.
Soon after lunch Dr Mitchel came to see us to tell us about a heart procedure they were going to do. You have a duct in your heart (PDA Duct) that should have closed soon after you were born, but it didn't. So Dr Mitchel will go into your chest and tie off the duct so that all the blood flows where it should. We are also hoping that once this is complete it will help your intestines do the job they should do.
You went in for surgery around 4:20pm and Mom and Dad were VERY worried, but luckily Auntie Amy and Grandma were here to keep us company. We were also talking to Grandma Vonnie and Grandpa Roger every hour or so to keep them updated.
Not an hour later the nurse and the doctor came in to see us all and they said you were a perfectly behaved boy and the surgery was a great success. You even pooped while on the surgery table. You are just so cute.
We all hated to leave the hospital tonight, but we knew you were in good hands and boy did Mommy need a shower! Daddy too! But we knew we would be down to see you first thing tomorrow morning. We love you so much!
Even though being transferred to Children's Hospital was the scariest night of my life, it proved
to be the best thing that could have happened to us. We had spent the last week in limbo in the Longmont NICU having no idea what was going on or how to make things better. We finally arrived at Children's around midnight, they gave us a parent sleep room that consisted of a bed, sheets and a phone for $1 rental, but at least we had somewhere to sleep. By the time we were at Connor's bedside at 8am the next day Drs Karrer and Hendrickson had already identified the need for a PDA duct ligation and the possibility that Connor had Hirschsprung's Disease. We had hoped after the PDA Duct ligation that the new blood flow would correct Connor's bowel problems, but things remained the same so the doctors took a tissue sample from Connor's colon and when the test results arrived they discovered that Connor did in fact have Hirschsprung's disease, a rare disease of the large intestine where the ganglion cells, or nerve cells that make the intestine push stool down to be excreted, are absent in some or all of the intestine. The stool then backs up in the intestine causing an infection in the belly and would eventually cause death. This disease is more often found in children with Down's Syndrome and has varying degrees of severity.
Thankfully after several days of observation and an enema, the doctor discovered that only the lower sigmoid region of Connor's colon was effected and at 3 months he would be eligible for a Pull Through Surgery. So they kept Connor in the hospital for observation for one week after we arrived to make sure he was stable and to educate us on how to care for Connor's bowels until the surgery.
Each day we would go down to the hospital and sit by Connor's side in the one chair that was there. Every three hours I would go to the breast pump room (which was about the size of a phone booth) and pump enough milk to feed the entire NICU! I was just glad they continued to feed Connor the breast milk and the my milk stayed so that I was able to nurse Connor until he was a year old. These pumping breaks were literally the longest 20 minutes of my life. I am not sure what the new hospital has, but hopefully there is a little tv or something in the pumping room!
Eventually on November 5th after they had deemed Connor stable and taught us how to irrigate his bowels with a tube and saline solution (which we had to do for 3 months) we were released from the hospital and ready to go home. It was so funny because I had been praying for so long for Connor to come home with us, but when they actually said we could leave I started to panic a little and worried if I would be able to take care of this precious little baby. Until now I had hardly even changed his diaper or dressed him in clothes. Luckily love overcame fear and I knew that Paul and I would be wonderful parents. As you can imagine once we arrived home we could hardly put Connor down. He rarely if ever slept in the crib or pack and play and eventually we just adopted the family bed and we haven't changed since!
Connor looked so tiny in his car seat it seemed like it really wasn't very protective.
At 3 months old Connor had his pull through surgery, they removed the lower sigmoid region and he began popping right away and hasn't stopped since! I was very impressed with the care we received at Denver Children's Hospital and I was particularly impressed with our doctors Dr Karrer and Dr Hendrickson. While I never imagined this situation happening I was so thankful to have such a great hospital close by!
A continuation of yesterday's post, here are some more letters we wrote to Connor while he remained in the NICU. While our stint in the hospital was about to get worse, it was also the beginning of the answers to Connor's problems. Thank goodness for Denver's Children's Hospital!
Written by Kim
October 28, 2002
Dear Connor,
Today was a day filled with joy and concern. I was so excited to come to the hospital and see you today because I knew you would not need the bililights, which meant that I could hold you all day long. When I called Karen in the nursery last night she told me you had gained 16 grams. Dad and I were both VERY excited about that. When I came into the hospital this morning you took 23ccs from a bottle. I just knew it was going to be a good day. You laid in my arms all morning long, I couldn't bare to put you down. I just love it when you snuggle your head into my neck. You are the most beautiful and loving baby. Sometimes I can't believe you are mine. I often wonder how my life can be any more perfect. I have the greatest husband and the most wonderful son. We sat on the couch and read stories all day. We read about Old Yeller, Paul Bunyan, and Pecos Bill and of course we read your favorite book "Guess How Much I Love You." Later in the afternoon we had a wonderful visit with Aunt Kathy and your little friend Adrian. We had lunch on the floor and Adrian just stared at you. He can't wait until you start going over to his house to play. You two are going to have the greatest time growing up together.
When Mom and Grandma came back to the hospital to feed you at 5pm you weren't feeling very good. Dr Rosquist came to visit and we decided to go for a trip to Denver. You were the greatest little thing and got to ride in the ambulance with the nice nurses. I am sure it was very exciting. We are at Children's Hospital now and the nice doctors are looking you over. I knew we are going to figure out what is going on . They are going to fix it and you will soon be home with Mom and dad. We love you so much. Can you guess how much?
We love you all the way to the moon and back.
After a trip home to pick up Grandma Sarah and Paul we arrived at the hospital to find things spiraling down for Connor quite rapidly. It was kind of like watching a car accident. Everyone was rushing around quickly taking care of Connor and another critical baby that had just been born, but at the same time everything seemed to be moving in slow motion and the sound was drowned out by my mind wondering what was happening. The nurses were amazing,
truly like Mothers to me rather than clinical medical nurses. I will never forget seeing Connor's limp little body laying in the crib with the oxygen tent over his head. I just wanted to hold him, he needed to be held by his Mom! The sweetest nurse just stood by his side singing Amazing Grace and rubbing his little fingers. The Flight for Life team came to take the other baby to Denver and we were waiting for Connor's team to arrive. The LUH nurses kept taking Polaroid pictures of Connor and giving them to me. I didn't understand what was going on and I kept screaming inside of my head saying "Stop taking his picture" because I was thinking that they thought these might be his last pictures alive. In retrospect however, I wonder if they took the pictures so when we arrived at the hospital we would be able to identify Connor, because there was not room in the ambulance for us ride along with him. Everything was so scary and all I could think of was the worse case scenario. I kept praying and praying that Connor would be ok. Life couldn't be that cruel, God wouldn't separate me from my baby, he was going to live! I'll never forget the long drive to Denver Children's Hospital, following the ambulance wishing I could be in the ambulance with Connor.October 29, 2002
Dear Connor,
Again today was filled with joy and concern. We woke up in our little parent sleep room somewhat refreshed and immediately rushed downstairs to see you. You are just so cute I can't take my eyes off of you.
Around lunch time Auntie Amy brought Grandma Sarah down to the hospital to see you. We were all staring at you and saying how you are the most beautiful baby we have ever seen.Soon after lunch Dr Mitchel came to see us to tell us about a heart procedure they were going to do. You have a duct in your heart (PDA Duct) that should have closed soon after you were born, but it didn't. So Dr Mitchel will go into your chest and tie off the duct so that all the blood flows where it should. We are also hoping that once this is complete it will help your intestines do the job they should do.
You went in for surgery around 4:20pm and Mom and Dad were VERY worried, but luckily Auntie Amy and Grandma were here to keep us company. We were also talking to Grandma Vonnie and Grandpa Roger every hour or so to keep them updated.
Not an hour later the nurse and the doctor came in to see us all and they said you were a perfectly behaved boy and the surgery was a great success. You even pooped while on the surgery table. You are just so cute.
We all hated to leave the hospital tonight, but we knew you were in good hands and boy did Mommy need a shower! Daddy too! But we knew we would be down to see you first thing tomorrow morning. We love you so much!
Even though being transferred to Children's Hospital was the scariest night of my life, it proved
to be the best thing that could have happened to us. We had spent the last week in limbo in the Longmont NICU having no idea what was going on or how to make things better. We finally arrived at Children's around midnight, they gave us a parent sleep room that consisted of a bed, sheets and a phone for $1 rental, but at least we had somewhere to sleep. By the time we were at Connor's bedside at 8am the next day Drs Karrer and Hendrickson had already identified the need for a PDA duct ligation and the possibility that Connor had Hirschsprung's Disease. We had hoped after the PDA Duct ligation that the new blood flow would correct Connor's bowel problems, but things remained the same so the doctors took a tissue sample from Connor's colon and when the test results arrived they discovered that Connor did in fact have Hirschsprung's disease, a rare disease of the large intestine where the ganglion cells, or nerve cells that make the intestine push stool down to be excreted, are absent in some or all of the intestine. The stool then backs up in the intestine causing an infection in the belly and would eventually cause death. This disease is more often found in children with Down's Syndrome and has varying degrees of severity.Thankfully after several days of observation and an enema, the doctor discovered that only the lower sigmoid region of Connor's colon was effected and at 3 months he would be eligible for a Pull Through Surgery. So they kept Connor in the hospital for observation for one week after we arrived to make sure he was stable and to educate us on how to care for Connor's bowels until the surgery.
Each day we would go down to the hospital and sit by Connor's side in the one chair that was there. Every three hours I would go to the breast pump room (which was about the size of a phone booth) and pump enough milk to feed the entire NICU! I was just glad they continued to feed Connor the breast milk and the my milk stayed so that I was able to nurse Connor until he was a year old. These pumping breaks were literally the longest 20 minutes of my life. I am not sure what the new hospital has, but hopefully there is a little tv or something in the pumping room!Eventually on November 5th after they had deemed Connor stable and taught us how to irrigate his bowels with a tube and saline solution (which we had to do for 3 months) we were released from the hospital and ready to go home. It was so funny because I had been praying for so long for Connor to come home with us, but when they actually said we could leave I started to panic a little and worried if I would be able to take care of this precious little baby. Until now I had hardly even changed his diaper or dressed him in clothes. Luckily love overcame fear and I knew that Paul and I would be wonderful parents. As you can imagine once we arrived home we could hardly put Connor down. He rarely if ever slept in the crib or pack and play and eventually we just adopted the family bed and we haven't changed since!
Connor looked so tiny in his car seat it seemed like it really wasn't very protective.
At 3 months old Connor had his pull through surgery, they removed the lower sigmoid region and he began popping right away and hasn't stopped since! I was very impressed with the care we received at Denver Children's Hospital and I was particularly impressed with our doctors Dr Karrer and Dr Hendrickson. While I never imagined this situation happening I was so thankful to have such a great hospital close by!
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