Her Belly:


Her Sister:


Her Nap Time:

I intended to have entered our last blog entry. However, many have asked for an update on Emma that there is no better place to give it than here. Emma is gaining a very healthy ounce per day. Her belly button is now dime sized and still scabbed over. She has an appointment to have the last of her stitches removed on October 15th. Her hair is slowly growing back from the incompetent nurse.



She is a normal baby in as much as you imagine. She sleeps, eats, and poops with the best of them. She even had her first bath.



I hope to load some more photos in the upcoming days.

We are home. Emma's recovery has been nothing short of remarkable. She has done in 5 days what unfortunately takes most gastroschisis babies months or more.

On Tuesday, Ashley and I took a stand by refusing to consent to Emma's 3rd and 4th potential surgeries. We compromised by allowing a surgery for a temporary catheter. The advantage being only one surgery to put the catheter in instead of one to place it and another to remove it. The surgeon warned us of all the complications that may arise any time a baby is intubated. We were terrified. Ten minutes before the surgeons were to arrive to take Emma away she had a bowel movement. I yelled at the nurse's like Paul Revere announcing that the British were coming. They passed along the news to the OR and the surgery was delayed for another day. Hours later, Emma pooped again and again. The next morning she started on 15ml of pedalyte which they expected she would vomit. She didn't and surgery was delayed for another day. On Wednesday they ordered us to increase her volume of pedalyte to 30-45ml which they expected she would vomit. She didn't. Thursday she started 30ml of breast milk without any complications. Friday was 45ml of breast milk - no complications. A healthy color returned to her face and belly. Saturday Dr. Rice and his team came to visit. The look on his face was of absolute astonishment. How was it possible that one of the worst cases he said that he had ever seen was now towards the end of the fastest recovery he had ever seen? He gave the word, "let's send you home".

I do not know and can not pretend to understand how fortune is divided among us all. Still, without support from each other and this community we would never have been in a position to be so fortunate. Many people prayed for Emma and many others offered words of encouragement. We are grateful to all of you who have been there every step of the way.

Now that Ashley and I provide most of the care there is little time to write. I am between shifts at the hospital and Ava is eating lunch, so I have a few rare moments. Emma was due for surgery on Tuesday, but she managed a miraculous poop only 15 minutes before she was to be taken away. That stopped the surgery. Now they've removed the tube from her stomach so her bowel can try and process anything in her stomach. We've started pedalyte feedings every 3 hours with the hope that she may have some breast milk tonight. She's really hanging tough! She's had regular poops, a whopping 3 of them last night with me, and is eating well. Dr. Rice says he is very pleased and that she is well ahead of the curve right now.

I realize this is a poor summary of the last 3 days, but I hope to do a larger entry tonight or tomorrow morning. Ava is emptying all of the socks and underwear onto the floor. Gotta go!

My wife and I are spent. We carry all of the stress, depression, frustration and anger that we can stand, but there is no quit. This is our family. Nothing means more. Emma has taken a turn for the worse on pure negligence by her nurse. Early this morning the nurse broke both her PICC and IV. They incorrectly decided to place the IV on the left side of her head and she pulled it out. Then the placed it on the right side of her head with an enormous and unnecessary amount of tape. They shaved both sides of her head, yet managed to put the tape on mostly her hair, which will make it difficult and painful to remove. The nurse once gain failed to place the new PICC in, twice, and now the doctor proposes that Emma undergo another surgery to install a Broviac. The surgery can compromise Emma's fragile immune system, leave her open to a blood infection, and permanently damage her lungs. We refused and will insist that they place the PICC correctly this time.

Emma is in enormous discomfort, yet they have moved her again to a room for babies that are MORE stable. Unbelievable. Now, a nurse only comes by once every 3 hours despite her delicate condition. The nurses clearly have no experience with gastroschisis and neglect many of the assessments that need to be made. This leaves my wife and I to shoulder the burden once again by split shifts at the hospital with Emma while the other parent stays at home with Ava. I have used all of my yearly vacation yet I have spent virtually no time with my wife. We live in a parallel universe that revolves around 20 hours a day of single parent care. I am exhausted. She is exhausted. We just want Emma home. Now, we could be set back by months if we're lucky enough that Emma remains healthy despite the nurses. She is at the hospital now. I miss my beautiful wife.

Emma is in a new room for more stable babies. They'll begin feedings in the next few days along with removing a bothersome tube from her mouth that pumps out the contents of her stomach. She seems more comfortable. They've cut her morphine dose in half without upsetting her. The dressing on her abdomen is silver dollar sized and tinged with dried blood. She still receives all of her nutrition from the PICC line (lipids and TPN which are basically vitamins and fat).

I don't know why Emma has healed so remarkably fast. We have a great surgeon and my family is with her nearly every waking moment. Still, I think even the staff is surprised at how quickly things have turned in her favor. On her birthday, we were looking at a minimum of 6-8 weeks to try and heal. Now, it appears she may not only totally heal in half that time, but come home in just a few weeks. Simply unbelievable.

Dr. Rice met us in the waiting room after her last surgery on Friday. He told us the good news, shook our hands, and headed back to the OR before his next scheduled surgery. However, before he reached the operating room double doors he did something curious. He slowed his stride, looked over his shoulder at us, flashed a big smile, and was gone. It was the way he looked at us that was so curious. I don't think he expected me to be looking his direction and witness the smile. His smile was so large that I could tell it meant something more than just joy. It must be a wonderful and empowering feeling to tell a patients loved one that everything is going to be okay because of the work you've done. After his many years of surgery, through all of the successes and failures, he must recognize the need to reflect, for no matter how brief a time, on his role in the story of peoples lives. His hands are instruments of fortune which dictate a result that doesn't necessarily obey the will of his heart. For that, a surgeon could be considered a tragic figure. To have a world of knowledge and skill for influence, but to be at the very same mercy of an outcome for those that have none. We are grateful that it was a smile.

In the NICU lobby waiting for Emma to come back from the OR.
Dr. Rice has done it again. Emma's opening was small and he said she did great! The bowel is still inflamed, but he believes she is well on the way to a successful recovery. He fashioned a belly button that will take 6 months to heal. First, it will take 7-14 days of rest. Next, they try to feed her, and if all is well with eating then it's time to come home! We're waiting to see her and she should be here any minute.

Emma has surgery on Friday. The goal is to close the half-dollar sized hole in her belly. She refused to sleep last night. She's now 8 days old and starting to act more like a fussy little baby than someone who is in great pain. I held her pacifier for nearly 2 hours last night trying to help her go to sleep. She's too strong willed for that. She's had a go at pulling out virtually all of her wires and succeeded. That's our girl. I left around 230 am and Ashley took over at 4.

I feel like I've been awake for 8 days. Sunrise and sunset are suggestions of the passing time, but the moment since induction is continuous. The ward is filled with tiny lives, barely begun, having to fight for a world that most take for granted. Outside the hospital, the streets are busy. Drivers cut off pedestrians to futilely capture a few more hurried seconds that are lost in their memory once they arrive at their destinations. This is a life, unrealized by its victim, that is governed by a checklist: eat dinner, read email, and watch television. The seduction to do without thought is omnipresent in our culture. It is a sedative for the peripheral fears that reside within its host. Inside the hospital, the children in the ward did not ask for their burden, but they assume it with the courage and determination that sleeps in us all.

A baby in the corner of Emma's room won't make it. The doctor said she is, "waiting to die". She weighs barely a pound. She is never visited. She carries with her the corporeal limits of a body and mind unable to escape the boundaries of human existence. I need to apologize to her. I am sorry baby girl, on behalf of all of the hours wasted in this world that deserve a better home in your hands. I hope that in your rest you dream of the love that is and not of a love that will never come to be. Today is your day. For everyone else, they call it Wednesday - just another day.

Emma had another rough night. She changed rooms to accommodate another high risk baby, but we feel it ended up being for the best. Her new nurses are providing great care and attention. She was breathing well last night around 1am, but started to have weezing and labored breath at 3am. The nurse did a chest x-ray, which turned out negative, and assessed her status. I stepped out at 3am for a coffee, but the cafeteria had already closed. I thought there was a vending machine in the basement, so I took the elevator. No vending machine. I ended up getting stuck because the elevator would only go to the 1st floor (of course, I didn't know that, so I pressed buttons for minutes without result. Luckily a custodian let me in on the secret after 5 minutes on my own. Never crossed my mind to take the damn stairs!)

They increased her o2 level. She also may have some swelling in her lungs, but we'll see. She's had a few lucid moments in between being asleep and writhing in pain. They are moments like being in the eye of a hurricane. A time to rest, reflect, and prepare again.

I can't thank everyone enough who are involved in our family's experience. We are so grateful for the outpouring of support for those that are affected by Emma's story, whether gastroschisis has touched their family or others that they love. I apologize if I'm not able to respond to your comments, but between caring for Ava and Emma there isn't any time to sleep let alone do a blog entry. Please continue to comment and email my wife and I as our community tries to make sense of gastroschisis.



Emma has had a real rough time lately. She's on oxygen and the nurses say she has a heart murmur, but it may go away in the next few days. She's also losing weight. She's at 5lbs 3ozs now (6lbs when she was born). Apparently it's not unusual for gastroschisis babies to lose weight, but they are still concerned. I was with her until 2am last night and Ashley went in around 3am. I just came back from the hospital on a 2pm to 6pm shift. Her breathing has been slow, but deep. It's dinner time and then I imagine Ashley will head in again. One day at a time, right?

Emma continues to have labored breathing. She's making a weezing sound and works hard for air. Despite the obstacles, she is getting enough oxygen and her bowel condition is improving.



Here she is with her many wires. I'm starting to think they're trying to turn her into a radio antenna. Ashley typed up a girly name tag for her and placed it on the end of her bed. The surgeon said she may only need to be reduced two more times, likely by Monday, and then it's time for her next scheduled surgery.

A new baby arrived from Alamance county last night. He was born with a large tumor on the left side of his face. The ultrasound technician had no idea that the tumor was there, so when the mom gave birth she had no idea either.

Off to the hospital. Emma is has stopped breathing a few times. Mom is there and grandma is on the way to watch Ava for us. The bowel is putting pressure on Emma's diaphragm which in turn put pressure on her lungs. Her heartrate is very high as she tries to keep up.

Emma had one of her head IVs removed and is resting comfortably. Her bowel has descended further in the silo, so much so that the bandage conceals what's left. The surgeons say that she'll have it all back inside her no later than next week.

Dad's pooped. Time to drive home and get some rest before we begin it all again. Mom will kick things off around 4am. Oh, and it was our anniversary a few days ago. Maybe we'll get back to that in a few months.

Late.
Emma's PICC line failed, or so they thought. Her left arm developed a mass, so they thought that the line was leaking and irritating her skin. They pulled the line out only to discover that the line is not leaking. Now she's left with an unknown mass on her arm and no nutrition. They can't use her left arm due to the mass and they've been failing to place it in her right arm. They get it as far as her elbow, but no further. She is in serious danger of dehydration if they don't get it in by midnight.

I'm sitting in the lobby because they won't let me in to see her while they try and do this.

Later.
It's now Friday morning. Last night was horrible. Emma was in tremendous pain until they gave her a 2nd dose of morphine around 3am. She has two IVs in her head, a mass on her left arm, and her right arm is covered in bruises from failed PICC attempts. I came home around 3 and let Ashley know what was happening. She sat with her from 4am until around 630am. The latest news (It's now 9am) is that they've managed to run the PICC line into her leg. They'll keep her on the IVs until they know that the PICC is working. On the positive side, her bowel was reduced further and Dr. Rice has asked for another reduction.

I'm exhausted. I think I slept an hour. I'm at home with Ava and my best friend coffee.

Emma is resting comfortably. Dr. Rice has ordered a reduction in the silo which is fantastic news. That means her bowel has imporved to the point that they can put more of it inside her. She had a poop last night which is brilliant! The bowel appears to have lightened in color as well - also good news. I sat with her for a long time, cupping her head in my left hand while she held my index finger. Her new nurse Crystal is very nice. She said that the reduction was supposed to take place this morning, but Dr. Rice is in another surgery, so we're in a holding pattern.

Ava, mom, and I went to the Life & Science Center this morning. It's important to keep Ava in her routine, plus it's a lot of fun for all of us. We had a quick lunch and then they went down for a nap while I drove to the hospital. We had a strong storm last night. The clouds have stayed around this afternoon to offer a little relief from the oppressive heat. I put my head down beside Emma while she held my finger. I felt myself slipping off to sleep, so I decided to grab a cup of coffee before heading back up to be with her. Cell phone reception is poor in the hospital, so I haven't been able to tell mom how she is, which may be for the best since she's likely asleep.

Still at the hospital. Emma is sleeping soundly in the dim light of the NICU. I held her hand some more. She woke up for a short spell, but the nurse gave her a pacifier and it soothed her. I can't believe she has a full head of hair. What a beautiful little lady. I know - I'm biased.

The hospital is fairly quiet except for a few of the cleaning crew jawing in the corner of the cafeteria. I'm sitting at one of the many empty tables. It's been quite a start to her life. After only one day she has undergone a major surgery and faces the lenghty challenge of beginning to heal. I'm so proud of her. Triumph over adversity will not be reached at the end of a long journey, but in the rise and fall of her every breath.

Emma's doing well. We watched her sleep last night. She looked very peaceful and had nice relaxed, steady breathing. We talked with the night doctor for the NICU and he spoke very highly of the Duke pedriatic nurses and doctors (no news to us). They ran a PICC line early this morning for better nutrition. It runs near her heart, so we were glad to know it went well. Her bowel is descending well and the color is unchanged (which is good. We just don't want them to get darker in color).

Ava and grandma are on the way over. We'll have some breakfast and head over to Emma.

The NICU staff believes her intestine are not in good shape. The next few weeks will tell us more. She may also need a blood transfusion. Her monitor alarms have been going off quite a bit due to poor respiration. She is clearly in a lot of pain. They administered morphine.

I took time out this afternoon to be with my daughter Ava while Ashley slept. It's been rough on her to not have mom and dad around at night. I elected to stay at the hospital again tonight so I can be in the NICU the rest of the night. Ashley is there now while I type from our room. I just dropped Ava off with her grandma, so I needed a minute to collect my thoughts. Time to see how Emma and mom are doing.

It went very well. Her intestines are inflamed, but there isn't any sign of necrosis. Dr. Rice placed them in a silo and they will slowly work their way back in to her abdomen. He'll perform another surgery in two weeks to close the opening. Ashley still hasn't even seen Emma, but she's supposed to be back in the NICU at 2pm.

Dr. Rice informed us that Emma's condition is more severe than they had anticipated. She's in surgery and will be for the next 2 hours. I sat with Emma in the NICU while singing her lullabyes and stroking her hair. Mom was still too weak to visit. After an hour or so we went across the hospital to the OR. The doctors tried to assure me that she's in capable hands, but there aren't any words for this. Now we wait and pray.

Baby Emma Grace was born at 9:00am on August 19th, 2008 at Duke University Hospital.

Getting tense. They brought me the booties, mask, and such. They affectionately call it the "bunny suit". They're getting the supplies ready for the trip to the OR. Excitement has changed to nervousness. A new anethesiologist is here to figure out why the epidural isn't working as well. Two nurses are watching the fetal monitors. There's so much traffic I think we're a coffee stand short of calling this room a mall.

Good gravy when's this baby coming?? The epidural isn't as good as last time, so Ashley's in some discomfort. The doctor had her lie flat and that seems to have helped. We've been watching the news in the meantime. The forecaster drew all of the possible paths for Tropical storm Faye and I mean ALL of the paths. It looks like she wouldn't be surprised if Vietnam was in the path. I know you have to make predictions but c'mon.

Epidural is in. Dad is tired. We're watching some thriller called Suspect Zero with Ben Kingsley. Anything that helps to keep my wits about me is welcome. The doctor will be in to check Ashley's progress at 4 or or 5am. Contractions are coming every 3 minutes now, but thanks to the epidural she will feel them less.

Wow, already 3-4cm. She's moving along just like she did with Ava, so we could see Emma much earlier than 9am.

Contractions coming every 5 minutes now. As soon as the nurse returns she'll check to see if the foley bulb needs to be removed. I imagine Ashley will ask for the epidural soon as well because she's really starting to feel the pain. I'm just about ready for another espresso drink.

We're underway! The foley bulb is in place and the pitosin is flowing. Now we wait. Ava came about 7 hours after the pitosin started, so if that's any measure of how this will go than we'll have a baby around 9am-ish.

I'm getting hungry. I feel like I could eat a whole pizza. Ashley pegged our doctor's face from a terrible Ben Stiller movie from 1999 called Mystery Men. She thinks he looks like this:

http://www.imdb.com/media/rm4040333568/tt0132347

I think she's right. We still haven't actually started the induction. We're both frustrated with the lack of information about when we will in fact start. It may very well be late into the night or early tomorrow morning. The table I'm typing on is covered in so many cameras and wires it must look like I'm covering a war.

Hmm, just met the doctor. I'll call him Dr. Eeyore Allen, as he is a combination of Woody Allen and Eeyore from Winnie the Pooh. I'm sure it's bad form to make fun of the doctor who'll deliver your child, but I'll go ahead and do it anyway. He has long black bangs that he keeps brushing out of his face while he talks. His voice is nasal and wanders off as he thinks out loud. It's a rambling sort of dialogue that I'm sure is full of useful information if it were in any coherent order. He looks like he hasn't slept since he first started medical school, which may not have been that long ago. I wish he'd stop itching.

He handed my wife a consent form for something called a Foley ball/bulb. The idea is to place this inside her and make her irritated. It's working and they haven't even started.

The anethesiologist (sp?) just left. Ashley is ready for the epidural before she even has the IV in. She'd take an epidural with an epidural on the side if she could. I'm not sure why people prefer natural child birth over not feeling pain. I guess the word natural seems to conjour up the relaxing images of lush meadows and babbling brooks. Truly it is only the natural state of Hell. Blood curdling screams, explicit language, and the desire to see others in as much pain as yourself.

We have the television on to some spooky A&E show called Paranomal State. These students from Penn State investigate paranormal happenings around the country with monitors and handheld devices. Probably setting the wrong mood for a celebration of life, but Ashley seems to enjoy it.

We're waiting for the IV still. The nurse left a stack of apple juice cups so high for Ashley that almost seems like a dare.

In the room!
Emma is looking good at 150 bpm. A good clip on the bicycle! She's a natural.


I hooked up our laptop so we can watch our daughter Ava at home. This is the first time either of us have been away from her for the night, so it's tough. She's having a great time with grandma.



We're both glad that everything is underway. We're eager to meet Emma. I've already slammed a Starbucks double shot, so I'm wired right now. My wife has veins impervious to needles, so they're having a difficult time getting the IV started. The vein literally pushes the needle out everytime. She's probably been poked half a dozen times so far. Nobody's asked, but I'm feeling good. Not sure if they'll check my contractions either, but I'm open to whatever the doctor says.

Wait. We arrived a little early, about 745, and thought we started with some good luck. We rode the elevator to the 5th floor with our attending doctor. She introduced herself - nice lady. Then she said that due to a few recent transfers to the NICU that we'd have to go slower than expected - not nice. So, we sit in the lobby, 15 minutes now, while we wait for our room to be ready. My wife hopes that the reason they're taking so long is for flowers and fresh baked cookies.

I've already forgotten stuff. No matter how hard I try to remember, or how early I start to pack, I forget.

We've been busy getting ready for Emma, so I haven't had anytime to write. I think what I'll do on Monday is update the blog from the hospital. I'll give an update around 9pm and try to follow up every few hours. It'll help keep me sane.

I've read many books. When I lived in downtown Portland I would commute to work on the city bus. One of the highlights of my day was quiet time with a book on the way home. The soft thud of the wheels rolling over steel grates on a bridge. Rain drifting around in the night and vanishing into the body of the blackened Willamette river outside. The bus exhales at stops, breathes in more passengers, and continues on course. Sometimes I would stop at a coffee house. Coffee - black. I would unroll my paperback from my back pocket and continue to read. The authors were larger than life and their stories, heavy with wisdom, were a meal unto themselves. However, sometimes the most important words written are those less concealed by craft and cleverness.

NST was normal. Ultrasound was normal. Doctor's visit - normal. However, neither of us left Duke University Hospital feeling normal. Our first meeting with doctor Small was relatively uneventful for most of the chat. She felt that Emma was progressing well, but aired on the side of caution. It's her belief that we should stick to the August 18th induction due to the possibility of increasing the chances of stillbirth related to gastroschisis. Neither of us acknowledged what she had said. It was the first time that either of us had heard that there was a relation between gastroschisis and stillbirth. Ashley continued down her list of questions, but I could tell there was a subtle change in the tone of her voice. Finally, Dr. Small shook our hands and wished us well. We scheduled the remainder of our appointments before the induction and headed back to the car. 

4 lbs, 2 oz.! Great growth scan today. She's moved up to the 11th percentile. We're very proud of her - she's a fighter just like her sister. I was hoping for the high 3 lb range, but never expected her to eclipse 4 lbs. Monday is the start of the 34th week, so she really needs to pork up! We've started to waffle on the name Charlotte. Charlotte means "little and strong". Given her size, we felt that the name was appropriate. We called her Emma for so long that it just seems like an uphill battle to know her with another name. I didn't feel like Ava's name was up to us - just felt right. Same holds true for Emma.

The weekend is close. It always begins with a trip to the North Carolina Museum of Life & Science. Ava plays with the exhibits and we help when she asks. When the weather is cooler we like to see the animals outside. Bears, wolves, lemurs, and a handful of farm animals are definitely highlights. The real fun is in watching her think about what she sees. Better than that is watching what Mom thinks.

My wife is always engaged with her. They laugh while learning. I love my wife for her beauty and intelligence, but most of all for her compassion.
She believes that the things you love are worth fighting for no matter the obstacle. The giant can be dispatched by a stone. The mountain summit reached. Sometimes the impassable barriers of our own perceived limitations can be shown to us by others to be as paper thin as the thoughts that contain them.

Thunder simmers in North Carolina like nowhere else I know. The sound reaches out, stretched to its limit, resonating from the deep recesses of the atmosphere. It spans the sky and gives those below pause - better get inside.

The basics.
Charlotte has a mild form of Gastroschisis. The ultrasounds have shown small loops of bowel, but the majority of her organs are inside her body. We attend bi-weekly visits to the hospital, which include a non-stress test, an ultrasound to measure fluid levels, a growth scan, and a meeting with a doctor. The growth scan happens every 3 weeks as Gastroschisis babies tend to be small and are in need of added attention to growth. The doctor's visit is typically every 2 to 3 weeks.

Awake. I'm awake - 830 am. I slept. I slept well. Sleep doesn't come easy these days despite how exhausted I feel. I lay in bed Friday night until 1 am before giving up on the effort to fall asleep. I applied the strobing television to my eyes for another two hours. 3 am - I'll try to sleep. The sun leered through the window at 630 am and so I reluctantly rose after managing 3 hours of sleep.