Two.

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

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

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

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 on 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 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, and 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 and we feel so 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's, who gave us the strength to refuse a surgery for our daughter, the whole experience could have been much worse.