Friday, August 1st

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 Nine months of clouds and rain have been replaced by fairly mild weather outside of the summer.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

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

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

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

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

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

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

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.