Welcome.

Two.

2010-08-28T20:13:00.007-04:00

She is two. Two beautiful eyes that have witnessed the worst of life. Two ears that have exchanged the pulse of heart rate monitors and respirators for the pure laughter of her youth. Emma has turned two years old. We are parents who couldn't be more proud.

She had a party. There were balloons and cake; presents and friends; and smiles were in high supply. We spoiled her rotten with attention and told her how much we loved her every time she was near. Her face was covered in pizza sauce. I gladly kissed her.

Not all days are certain. We will never be clear of the helpless feeling of chance or the gamble of faith. I see Gastroschisis at all hours of the day, whether she hasn't had a bowel movement in some time, or is simply fussy. I worry if she isn't eating or sleeping enough, if the seat belt is too tight on her stomach, and for no reason at all. I worry that she doesn't know how much I love her. I tell myself everything is going to be alright.

My mom passed away two months ago. I visited her in a nursing home a few days before she did. She rarely spoke. Her body barely moved. I told her what she needed to hear, what I needed to say, and it was goodbye. It is a word of closure so often used. I am leaving for work. I am hanging up the telephone. It is an ending. Beautiful Emma, this is not goodbye.

One Year Old

2009-09-06T13:36:00.009-04:00

Emma turned one on August 19th. She says "Da"; she walks; and she smiles nearly every moment of the day. She may smile due to the end of her arduous start. We can't be sure without any capacity for her to say so. She smiles when she sees "Da", when her sister rubs her curly hair into her belly, when "Ma" lifts her into the air, and when Ni Hao Kai-Lan, with her enormous eyes, sings to her from the funny glowing box. She loves to feel soft food squish through her fingers. She laughs at the bath water when it shoots over the tub. She climbs chairs and waddles through the kitchen. Every task begins and ends with that glorious, unsolicited 6-tooth smile.

Emma is tall, in the top 75% of her age group, and understandably skinny - in the bottom 35%. Her belly button scar from surgeries is now minimal. The memories and emotions of her time in the hospital are still fresh. It is important not to forget life in the moments where you value it most.

A family of Canada geese lives beside our local lake. Every other day or so, for more than a year, the geese walk down a hill through our backyard. The mother and father guarded 6 or 7 goslings. Over time, they entered our yard with less. Five. Then three. They huddle close and eat dandelions before they cross the street to the lake. It may be a uniquely American characteristic to bestow virtue on those who endure. I admire the geese.

Now, the North Carolina summer recedes. A familiar, cool fall wind reminds us that everything is temporary. Even the seemingly infinite love that we feel for our families and friends is tempered by the time in which we have to spend it. I spend it in love with my family. Emma spends it smiling.

Additional resources

2009-07-21T20:50:00.002-04:00

Gastroschisis Support Group

Additional Gastroschisis Support Group

Also:

Omegaven-

Omegaven is saving the life of baby after baby with Short Bowel Syndrome (SBS) or Short Gut. It is an omega-3 based lipid solution made from fish oil. It has been used in 100+ pediatric short-gut patients by Dr. Mark Puder and Kathy Gura at Children's Hospital Boston. The recently published data on the first 18 kids shows a complete normalization of liver function measures within a couple of months, 5 times faster than kids on omega-6 based lipids. The parents of patients on this treatment are convinced that this is the real deal -- a cure for TPN-associated Liver Disease.

This does not mean that it will reverse all liver damage. It can help children: avoid liver damage, recover from liver damage that they have received from TPN, and in some cases it helps stabilize and improve the overall health of the patient so that when they do receive a transplant they recover that much faster.

One very important point about the treatment: It takes roughly a month or two before lab results show clear improvements, and in fact the labs tend to get worse before they get better

Click here and refer to Faith's place blog (her daughter received Omegaven and avoided a transplant)

A Brief Summary For Any Parents To Be - By Mom

2009-04-29T14:23:00.008-04:00

I can still vividly remember waiting in the ultrasound room for the doctor for what felt like an hour. We were only twelve weeks along, but the wait made my husband and I more than a little nervous. When the doctor came in, she told us that our baby had gastroschisis and that we could terminate the pregnancy up to 20 weeks. The fact that she said that made me feel that situation was very grave. Within 15 minutes we met with a geneticist who explained in greater detail what gastroschisis is. The only question I can remember asking was "how do you spell gastroschisis?" It wasn't until we got home and had time to do research that we really began to process what we had learned. I came up with a list of questions, something I ended up doing for each doctor visit.

I remember feeling disappointed at the lack of information in the web about this condition. I was fortunate enough to find a UK website, gastroscisis.co.uk that offered wonderful information and insight. It was a huge help and it was through this website that we met Kandi, a mother of a little boy born with gastroschisis. Kandi was amazing. She helped us to prepare for the challenge of having a baby in the NICU and warned us about some of the difficulty we might have with nurses and doctors. This was something we hadn't expected. She explained that her son's doctors wanted to perform an additional surgery which she declined. At the time, I thought there was no way I could do that.

We were being seen at Duke's Maternal Fetal Medicine and, therefore, were seeing several different doctors, and surprisingly, getting several different opinions. One told us our baby would have a belly button, another said she wouldn't. One said that I should be as active I would in a normal pregnancy while yet another advised against much physical activity because it could cause the baby to be even smaller than she already was (11th percentile.) This went on and on, but though we couldn't know it at the time, it set the stage for things to come because it demonstrated that doctors are not infallible. We had frequent appointments, ultrasounds, and NST's (non stress tests). It was difficult and stressful. We were encouraged by the information we learned from our ultrasounds, but the sonographers were quick to remind us that sometimes the ultrasounds can be misleading and the surgeons may find that the bowel is much better or worse than it appeared in ultrasounds.

We were induced at 37 weeks 1 day. Our daughter, Emma, was born on August 19, 2008. She weighed 6lbs. 1oz. which was larger than they anticipated. I guess the extra cheese, nuts, and added pounds didn't hurt after all. She went into surgery within a few hours because her bowel looked much worse than they expected. The doctor warned us that we would have to be patient because she was likely to have a long stay in the hospital.

We quickly ran into problems with some NICU nurses who decided that though our daughter's intestines were still in a silo above her, she should be weaned off her morphine. She cried for hours in agony until her morphine was restarted. We were furious! Other nurses surfed the internet and appeared to do the bare minimum. There were wonderful nurses, but you never knew which your baby might end up with, so we took turns staying by our daughter's side around the clock. We held her hand, talked to her, sang to her, and made sure that the nurses were tending to our daughter's needs. They didn't appreciate our near constant presence, but that wasn't important.

It was 8 days before we could hold her and at 10 days old she had her closure. She was finally all stitched up and we began waiting for poop and for her feeds to begin. The NP's kept saying that she would start on this day or that, but the surgeon wanted to wait. After 13 days she was discharged from the NICU out to the floor to make room for another baby. Her PICC line busted the same day and could not be reestablished, so they pushed us to consent to a Broviac line. In the meantime, they shaved both sides of her head and put two IV's in place.

We refused to let them do the Broviac line. We were confident that she was improving and was ready to try feeds like the NP's had said. This forced her surgeon to begin feeds sooner than he wanted. Emma was eager to feed and had begun pooping as soon as her replogle tube was out. She started on Pedialyte and was soon moved to breastmilk. Her dosages were steadily increased. They had warned us that if she was throwing up or even spitting up that they would stop feeds and we would need to allow them to put a Broviac in so that she could be given TPN (IV substitute for food that is rough on the liver.) Of course she threw up, but we were providing all of her care in the hospital and because she was still pooping and gaining weight, we decided not to tell them.

Emma was released after 19 days in the hospital and besides a skin infection caused by stitches that were not dissolvable as the doctors said they were, she has been completely normal. She was gassy for a couple of months, but we kept her on Mylicon and that seemed to help.

We are grateful that Emma did so well. We also feel fortunate to have had the advice of other parents who had been in the same situation, they were a tremendous support. Without their help, especially Kandi who gave us the strength to refuse a surgery for our daughter, the whole experience could have been much worse.

Emma Turns 8 Months Soon

2009-04-06T11:43:00.009-04:00

Emma is almost 8 months old now. She is all smiles and laughter.

Emma @ 6 Months

2009-02-25T21:02:00.007-05:00

Click on the images to enlarge.

Emma now

2008-11-20T20:36:00.008-05:00

Her Belly:

Her Sister:

Her Nap Time:

Update, September 29th

2008-09-29T20:35:00.005-04:00

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.

Home.

2008-09-08T12:43:00.024-04:00

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.

Catching Up, Thursday, September 4th

2008-09-04T12:42:00.003-04:00

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!

Breaking Point

2008-09-01T22:24:00.006-04:00

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.

Sunday, August 31st

2008-08-31T12:18:00.003-04:00

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.

Post surgery

2008-08-29T14:30:00.003-04:00

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.

Wednesday

2008-08-27T13:43:00.004-04:00

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.

Monday, August 25th

2008-08-25T09:50:00.005-04:00

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.

Sunday Evening, August 24th

2008-08-24T18:13:00.006-04:00

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?

Dinner time

2008-08-23T18:36:00.005-04:00

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.

Saturday

2008-08-23T15:50:00.001-04:00

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.

Barely Saturday

2008-08-23T00:07:00.003-04:00

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.

Overnight

2008-08-21T23:28:00.007-04:00

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.

Sleepy baby, Thursday, August 21st

2008-08-21T13:51:00.003-04:00

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.

12:30am Wednesday/Thursday

2008-08-21T00:28:00.006-04:00

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.

Wednesday evening, August 20th

2008-08-20T18:24:00.013-04:00

We were discharged from the hospital today. Ashley recovered much quicker than she did with Ava. It's easier to keep Ava on a schedule at home, so we ultimately end up spending more time with Emma. I also get a chance to write about our experiences with more focus. We've had some great comments and emails from gastroschisis parents to be, so I'll try to elaborate on all of the hospital details to try and remove some of the mystery. I encourage you to send us any of your questions as they are all welcome.

Emma is doing well. We both visited with her for half an hour before check out this afternoon. A visit first consists of checking in at the desk and waiting to hear it's okay to go in. Sometimes the attending doctors or nurses are running tests so they need us to wait until they're done. We then wash each arm up to the elbow for one minute to protect Emma from any germs. We each wear a protective gown and then head inside. Emma's room has four babies besides herself. They are all very premature. Her neighbor only weighs one pound and a few ounces. The premature babies lay in the center of their plastic boxes, while Emma is open to the air. They monitor her heart rate, breathing, and blood pressure. The nurses take great care to the detail of every infants needs, including dressing them in cute hats and blankets. They always introduce themselves and give us the rundown of how she's feeling, or if there's been any turn of events to note.

Ashley stayed at the hospital until 3pm and then it was dad's turn. Emma opened her beautiful little eyes a few times before fussing with the nurses while they adjusted her tubes. I was finally able to hold her hand. She has a wonderfully strong grip.

I rushed back home against traffic, we ate some dinner, and now Ashley is off to the hospital until 9pm. We'll put Ava to bed together and then it's back to taking turns at the hospital.

Good morning

2008-08-20T08:06:00.002-04:00

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.

Some pictures of Emma

2008-08-19T23:26:00.005-04:00

More bad news

2008-08-19T21:19:00.005-04:00

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.

Surgery #1 Complete

2008-08-19T13:47:00.002-04:00

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.

Surgery #1

2008-08-19T12:52:00.003-04:00

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.

9am - on the nose

2008-08-19T09:48:00.005-04:00

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

8:00am

2008-08-19T08:00:00.003-04:00

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.

7:00am

2008-08-19T06:58:00.002-04:00

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.

6:15am

2008-08-19T05:50:00.002-04:00

Slept a few hours (off and on). We're still a little ways out. Doctors have come and gone over the last few hours. We may have a new doctor for the delivery because Dr. Eeyore's shift is ending soon.

3:15am

2008-08-19T03:08:00.002-04:00

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.

2am

2008-08-19T01:50:00.001-04:00

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

1:30am

2008-08-19T01:24:00.002-04:00

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.

12:30am

2008-08-19T00:23:00.002-04:00

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.

Midnight

2008-08-18T23:53:00.003-04:00

Apparently we're inching closer to the induction. The nurse brought in several bags in preparation for the Foley bulb. I found a short description of this device:

Foley bulb: A Foley catheter, typically used to drain the bladder, has an inflatable bulb at the tip to hold it in place. For labor induction, a 30cc bulb is placed in the cervix and inflated. Mechanical stretch can cause reflex uterine contractions and force dilation to about 3 centimeters. In some situations, saline is infused through the catheter, which can help separate the membranes from the uterine wall, releasing hormones and phospholipases.

As soon as the Dr. Eeyore returns he'll insert the Foley bulb and begin pitosin. Hark, Dr. Eeyore?

11:15pm

2008-08-18T23:00:00.004-04:00

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.

10:35pm

2008-08-18T22:22:00.005-04:00

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.

10:12pm

2008-08-18T22:12:00.001-04:00

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.

9:15pm

2008-08-18T21:03:00.012-04:00

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.

8:12pm

2008-08-18T20:12:00.002-04:00

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.

Sunday, August 17th

2008-08-17T09:12:00.003-04:00

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.

Last week Emma weighed 5lbs and 3oz, so she should be right around 6lbs Tuesday morning.

Monday, August 4th

2008-08-04T19:50:00.018-04:00

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.

My family drifts in between where we were and where we want to be. In this place, nothing has gone wrong with the birth of Emma and everything that is good is possible. Sometimes the place in between is really quite a place to be:

There is a place where the sidewalk ends

And before the street begins,

And there the grass grows soft and white,

And there the sun burns crimson bright,

And there the moon-bird rests from his flight

To cool in the peppermint wind.

Let us leave this place where the smoke blows black

And the dark street winds and bends.

Past the pits where the asphalt flowers grow

We shall walk with a walk that is measured and slow,

And watch the chalk-white arrows go

To the place where the sidewalk ends.

Yes we'll walk with a walk that is measured and slow,

And we'll go where the chalk-white arrows go,

For the children, they mark, and the children, they know

The place where the sidewalk ends.

- Shel Silverstein, Where The Sidewalk Ends

14 days until the induction.

Friday, August 1st

2008-07-30T19:45:00.010-04:00

Today is August - only 17 days until the induction.

The summer continues to bring thick heat and heavy storms. We've lived in North Carolina for nearly two years. The move from Oregon was about as drastic a climate change as can be made in the continental United States. Nine months of clouds and rain have been replaced by fairly mild weather outside of the summer. The summer is extraordinary. Heaps of humidity and heat coupled with torrential rain, thunder, and lightening. Tough for me, ridiculous for my wife carrying a baby.

The NST went well. Emma is still moving all over the place. Ashley has felt some contractions over the past few days, but nothing so far to cause worry. We try to keep light hearted humor going as much as possible. It's healthy for us to stay positive especially with a 19 month old. She's absorbing everything she sees and hears. I was laying on the couch yesterday, minding my own business, when she walked up and said, "daddy don't be rude". It's two against one, soon to be three. Better get all my rudeness out of the way before it's too late.

Tomorrow we'll head to the museum again. I look forward to hurrying through each day just to be one day closer to Emma. I should stop to smell the roses, enjoy each moment of this mirage, but I'd rather press on to the oasis.

Monday, July 28th

2008-07-28T20:20:00.016-04:00

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.

I dropped off my wife at home and headed back to work. I thought about her and Emma on the long drive back. We have run the gamut of emotions during this pregnancy. I don't think the thought of losing Emma to this birth defect has ever been very far from either of our minds. We have been loyal to telling each other that everything was going to be alright. We know it may not.

When I was only four years old I loved to catch garden spiders. My mom didn't like that idea as much, so I'd head out of her sight to a friends backyard. I a saw a good one. I usually had a glass jar to catch them with, but I'd forgotten it at home. I decided to use my hands. Got him. I was so excited to show the spider to my parents that I ran all the way home. I called to my mom to come to the door since I couldn't use my hands. She came. I showed her what I had and she screamed. She swatted the spider out of my hand. "That was a black widow! It could have killed you." I started to cry. I didn't know I had done anything wrong or was in danger at all. It could have bitten me, but it didn't. After the catch and all the jostling from the run home it let me be. Sometimes your greatest fears may be present, whether you are aware or not, and they may feel as tangible as what lay in the palms of your hands, or as distant as a future that has not yet come to be.

We will keep our hands tightly cupped around the feeling that Emma is happy, she is healthy, and that everything is going to be alright.

Sunday, July 27th

2008-07-27T15:40:00.015-04:00

Her name is Emma.

We meet with the doctor tomorrow and still have unanswered questions. Despite last week's successful ultrasound there remain many obstacles. Will the induction date be moved out in order to allow her to grow as much as possible? Her bowel being exposed to the harmful amniotic fluid may not be as important as her overall growth in weight and length. There's a natural hesitancy to not believe a doctor, no matter how qualified, when it comes to the health of your child. You are their guardian, their protector, and speak or take action for someone who cannot for themselves.

We've become fond of the Duke staff and know many now by their first names. Not unusual I suppose given the frequency of our visits. However, with a rare complication like Gastroschisis it's not unusual to hear dissenting opinions. It is important to have a doctor whom you trust the most, though for many it may only be a degree of trust, in order to be more confident in your decisions. For us, Dr. Heine has been a great source of strength and confidence. He has a soft spoken, gentle delivery that is chock full of levity. It's not often that someone has recommended to me to go home and watch the movie Harold & Kumar - and mean it.

Dr. Heine

We meet a new doctor tomorrow, Dr. Small, so we are a little wary of any insight she may offer without a second opinion. Ultimately, we're sure to bounce whatever she says off of Dr. Heine.

The weekend has come to a close. Tomorrow we will be only three weeks from the induction. We have come a long way since first hearing about Emma's condition in February. It's at a time like this that I look to Harold & Kumar for perspective, "Did Doogie Howser just steal my car?"

Thursday, July 24th

2008-07-24T15:24:00.040-04:00

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.

Tuesday, July 22nd

2008-07-22T13:46:00.000-04:00

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.

Storm clouds gather in the front yard.

It's at a static time like this, before the sky opens and brings the future to the present, that the thunder tells me in its ancient code that the future is not when, but how. How do you build a strong family that is prepared for the future?

It's important to have family in times of crisis. Ashley's family moved to the area to be closer to her. Support can be given in so many ways, but none is more immediate than from your family. Often nothing needs to be said or done. When the time comes intuition takes over and the family closes rank. It's that same care and love that helps our family as we face the challenging days ahead.

The wind is picking up, along with lightening, and the delicate patter of summer rain. The trees sway under an increasing heavy load, and all objects absorb purple and pink flashes. The rain grows stronger. The storm is here.

Monday, July 21st

2008-07-21T14:38:00.000-04:00

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.

Duke University Hospital

The hospital.

The non-stress tests, or NST, are twice a week at Duke University Hospital. A trip to the hospital means meeting my wife there in the middle of the day after a 45-minute drive from work. I deal with traffic, parking, walkways, and elevators. I arrive early and wait. We walk down corridors and through doorways until we arrive at check-in. We sit in a cramped waiting room until it's our turn for the NST. She lies in a make-shift recliner while the technician hooks her up to the monitors. I sit in an armless chair near her feet while a technician pulls a privacy curtain around us all. They watch her for roughly 20 minutes while noting the babies heart rate and how much it varies. The more it varies - the more she's active. The more she's active - the better.

Lately we've had positive news. She has grown nearly a pound since the last growth scan to 2 lbs and 14 oz. The larger she gets, the better our chances. Our next growth scan is this Thursday at 230 pm EST. All we can do is hope.

I like to listen to music on my drive home from work. I did that tonight. I imagined bringing Charlotte home from the hospital. There were balloons and cake. Her name was hanging with streamers outside the front door. Everyone was happy to see her home. I was happy too.

Sunday, July 20th

2008-07-20T17:42:00.000-04:00

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.

Weekend sleep is always more difficult for me than the work week. At work I have my desk. It has a phone that rings for me, a computer that asks me questions through email, and co-workers that would like to meet in a conference room and talk about the very same phone calls and emails. At home I'm supposed to just relax. I can't. I don't think about anything in particular that keeps me from being relaxed. My mind is busy with nothing. I must be waiting for something to happen. A contraction. Labor. A movement from the baby. No movement from the baby. It's a kind of madness of forced lethargy. Be ready, I tell myself.

I've taken to doing anything that will keep me from that madness. When I cook the family meals I unnecessarily devote an exorbitant amount of time to preparation. Do I have enough broccoli? I have enough - but I don't have enough squash. I'll need to measure. I'll need to measure again.

I've taken my gardening to a whole new level than the cooking. I water, prune, plant, replant, and transplant. I walk the yards without any real purpose other than maybe I'll catch something that I hadn't seen the first time I had walked them. At least in the garden I have some say in the outcome of my plants. Sure, the weather will impose its own opinion, but I can actively try to ruin its plans. Gastroschisis is different. I have no say.

When we first heard our daughter had Gastroschisis everything in the world that wasn't in that dimly lit ultrasound room ceased to matter. We believed that was the end of her, that we were going to be asked to consider terminating the pregnancy. We were asked - we said no.

Our first daughter Ava faced her own challenges before she was born. My wife had a subchorionic hemorrage, which is a tearing of the placenta, in the third month. We met at the ER after she had rushed from home and I from work. Seeing her, covered in blood, was horrifying. The ER doctor searched for the pulse of the baby. No sign. Over and over she searched my wife's abdomen for the heartbeat. The sinking feeling within me continued to reach new depths. And then there she was. Her heartbeat scratched its way out through a handheld speaker. This little life whom I had never met said, "still here." Ava is now 19 months old and at the very center of everything that matters in this world to me. I cannot imagine a life without her, yet at one time, she was a heartbeat just below the surface of the world.

I imagine it's hard for any new father to try and understand what he can't see and only the mother can feel. Let me be the one to assure you that just below the surface your beautiful child and their immense challenge of Gastroschisis is talking to you: I'm still here.

Saturday, July 19th

2008-07-19T16:54:00.000-04:00

Welcome to Durham, North Carolina.

Over the next 30 days I intend to write all of my fears, hopes, and dreams concerning my unborn daughter Charlotte (TBA, we go back and forth with this name. You're welcome to participate in the poll at the bottom of the page). I hope that through my family's experiences in dealing with her condition known as Gastroschisis, we can help others who are trying to understand or cope with this condition.

An introduction is in order.

My name is Devlin. I am married to Ashley, going on 4 years, and the father of Ava who is now 19 months old. I posted a picture of her over there on the right. There is nothing more important in this world to Ashley and I than our family. I've wrestled privately with my thoughts concerning Charlotte for some time, for nearly 8 months, but I think I've finally given up on the idea that I can overcome this weight on my own. It was important to me to play the role of the strong husband for my wife. I let no weakness, no matter how great, creep into my heart. I could have no burden of my own if I was going to assume hers. However, the induction date is now only 30 days away and I can no longer avoid the emotional obstacles. It is my hope that by writing publicly I can find the confidence to face the challenges privately.

I hope you will take this journey with me.

2008-07-19T08:35:00.001-04:00