A Poem from Daddy

They Cannot Take My Love Away From Me

No Matter How Many Years I Sail Before The Mast

I Keep My Love Tightly Within My Heart

I Pray These Years Unfold Swift & Fast

Welcome Sweet Dylan To The World

I Will Stand Over You To Nurture & Protect

I Await Your Arrival With Bated Breath

Your Future, Life & Love, In Anticipation I Reflect

- Casey Smith

Getting Daddy Home!

Our Sailor!

Casey being gone has probably been the hardest part of the pregnancy. It was hard when this was a perfectly normal pregnancy, but being a high risk pregnancy has made it even harder. Laying in bed at night feeling Dylan do flips in my stomach is such an amazing feeling, and I only wish that Casey was here to be able to experience it with us. We are so fortunate to have such great friends and family surrounding us that are willing to step in. But nothing compares to Casey. I just wish that he could be at the Ultrasound Appointments to witness his daughter sucking her thumb in my tummy. Or being sassy (just like her mommy) and kicking the Doppler away when the Sonographer places it on my stomach. I just wish that we could sit it front of the TV, cuddled up on the couch at night, and Casey could have his hand on my belly as I drink a glass of ice water and Dylan starts to have a party in mommy's tummy.

My biggest journey in this pregnancy next to making sure that Dylan gets the best care possible has been to get her Daddy home for her birth. And let me tell you Ladies and Gentlemen, this has been quite a mission. He was originally going to be home for her due date (December 4th), his boat would beach days before and then he would board a plane home. But, with her due date being moved up 4 weeks I was determined to get him home for that. With an 18% mortality rate nationally, I am going to do EVERYTHING in my power to make sure that he is home in case something happens. The quest started the Monday after the Ultrasound that detected the Gastroschisis.

Dr. Mills had informed us that the Red Cross would be more than willing to help us get Casey home. He said that all I would need was a letter from my OB stating what Dylan's condition was. I made an appointment for that upcoming Wednesday. After meeting with the OB, she had said that she would help in writing a letter. It took over a week to get the letter and it was POOP!!!! All it said was: Casey and Ashley's baby had gastroschisis which was an abdominal wall defect, the baby would have a prolonged hospital stay, both mother and baby are fine, but mother is under extreme emotional distress and requests her husband at the birth. Really?!?! I am stressed? How Dare I?!?! Who wouldn't be stressed having their baby with no family close, no husband and a birth defect? The doctor's office was un-willing to alter the letter stating that they are not the babies doctor and do not know what the babies condition will be when she is born. All I needed was a letter stating the mortality rate of gastroschisis is "x", gastroschisis is "x", the baby will be in the hospital for "x" amount of time, the average birth is between "x" week and "y" week. But they refused. I called the Red Cross to have them help me. They said not a problem, they would help. Then an hour later I got a phone call from the stating that because Casey was not in Iraq or Kuwait they were unable to help due to new guideline changes. Is there any water in Kuwait or Iraq? I think not! I then met with a surgeon who stated that they could not write the letter for me because they were not my doctor, they were Dylan's and Dylan wasn't born yet. Agghhhh!!!! Will someone please make up their mind?!?!? I then called the OB's office AGAIN begging and pleading to help me. They then set me up with a neonatologist named Dr. Watterkotte. I was so prepared to be frustrated again. Prepared for another DEAD END!! Much to my amazement this was one of the best meetings that I had. I met Dr. Watterkotte in the NICU at Banner Desert at 7pm one night. He sat me down and went over EVERYTHING with me about gastroschisis. I learned all about the medical paralysis that they babies will be under for about a week after they are born, all the way to the first fecal movement the baby will have. All of this was such a relief to hear. Just to have someone sit down with me and explain what my baby girl had and what he journey would be was so nice. I asked Dr. Wotterkotte if he would please write a letter to the Navy so that I could get Casey home. Without hesitation he obliged. I received the letter in the mail early the next week. I couldn't have asked for a more eloquently written letter. He covered almost everything. From the delivery methods to mortality to surgery details. It was all there! The only thing it was missing was the fact that I will not go full term. Which is one of the most important parts or else the Navy will send Casey home on my due date.

I forwarded Casey the letters that I had. The sucky one fr0m the OB, the amazing one from the Neonatologist. The last mission was to set a date and get the surgeon to write a letter. This was accomplished on Tuesday! Wohoooo!!!! And this too was forwarded to Casey to give to the Navy.
I also recontacted the Red Cross and forwarded them ALL of the letters that I have gathered. They then contacted Dr. Watterkotte and took a statement from him pertaining to my due date and then the Red Cross sent a message to the U.S.S KittyHawk to inform them of the Smith Family Situation in the U.S.

So far so good. This has been hard trying to get the Navy the CORRECT things to allow them to get Casey home. Whenever I get an email from Casey he is trying his hardest to get home for Dylan. He says that his command is being very helpful right now, which is so great to hear. I know that Casey is having a very hard time not being here and the second that the Navy tells us he can be home in time there will be such a weight lifted off of our shoulders. So PLEASE, keep praying that the Navy will allow Casey to return home to his family during this crucial time. I have all the faith in the world that Dylan will be fine. We just NEED Casey to be here with us, just as much as he NEEDS to be here.

My emotions seem to run a little thin when people ask me about Casey being home for Dylan's birth. But I just have to have faith! Please keep us in your nightly prayers.

A Day to be born!

(Those are her Giant Feet)

After much research and consideration on where to seek care for Dylan and her condition we came to a conclusion. Even though this is a birth defect that is happening more often than in the past, it is still a rare anomaly especially in Arizona. After contacting the Department of Health and Labor statistics I was able to track the number of cases in Arizona in the past couple of years. I also contacted all of the local hospitals and pediatric surgery teams to get the numbers to cases that they have treated. I was not very impressed with the numbers. Most hospitals see less than 10 cases in a year on a high year. And we had to consider that one surgeon is not preforming all of the surgeries. Also, the facilities in Phoenix are not the best facilities for babies of gastrochisis. Yes, we have amazing hospitals out here, but they concentrate on births of multiples, not complex birth defects.

My mother devoted weeks of her time helping me research surgeons and facilities around the country to get Dylan to. We could not decide between two hospitals: Children's Hospital of Philly and University of California San Francisco. But as our research deepened and my fight with Insurance began, we realized that UCSF was the place for our little Dylan. They are the first hospital to develop in-utero surgeries. The team of doctors there actually specialize in Gastroschisis, they average almost 3 gastroschisis surgeries a week. Plus, Casey's family is not too far from the hospital (I think we figured out it was just about an hour).

My parents and I just went out to meet with the surgical team as well as the OB and neonatologist this week. We were so impressed with everything that UCSF stood for. They had such an organized manor. They really understood the complexities of gastroschisis as well as simply having a baby with a congenital anomaly. Everyone was more than willing to give us a tour of the facility, find us housing, you name it they were there to help! We were able to meet Dr. Farmer and Dr. Lee, both surgeons that specialize in gastroschisis, they also have an amazing reputation in Phoenix. They gave us the rundown of the surgery as well as complications that can arise. We were able to meet with Dr. Hopkins, the OB, who set Dylan's birthday. On November 14th I will go in and have an amnioscentisis to make sure that Dylan's lungs are strong enough to thrive outside of the womb. If all goes well then I will be induced on the spot. If Dylan's lungs need some more development then I will be injected with steroids for the next 2 days and another anmio will be done on the 16th. If all is well then, then the induction happens again. If not, we just keep repeating. November 14th is 37 weeks gestationally for Dylan. Some babies come as early as 35 weeks, so it will be very important to have the stress tests done to make sure that I am in the right place when this little girl comes. The only thing that has me worried was when Dr. Hopkins said "BE PREPARED FOR 4 DAYS OF LABOR!!!" What?!?! This isn't what I signed up for. 4 days of labor? At least the laboring rooms overlook the Golden Gate Bridge. Dylan and I have had a "heart to heart", she has agreed that 4 hours of labor sounds good to her!

What is Gastroschisis?

(The green box is a picture of her intestines outside of her body, the different colors are the blood flow )

Gastroschisis is an abdominal wall defect like omphalacele in which the anterior abdomen does not close properly allowing the intestines to protrude outside the fetus. The majority of fetuses with this problem are born to mothers in their late teens or early twenties. For some unknown reason, while the fetus is developing, the muscles of the abdominal wall do not form correctly. This allows some of the organs (stomach, intestine) to protrude outside the fetus's body. The organs outside of the fetus's body are floating in the amniotic fluid.
The amount of abdominal contents protruding outside of the fetus varies in each pregnancy. Some are very small (just a few loops of bowel), while others can be quite large and involve most of the intestine and stomach.

What is the Outcome for babies with Gastroschisis?

There is a range of severity for fetuses with gastroschisis that depends entirely on the condition of the intestine. Fortunately, most fetuses with gastroschisis do not have severe damage to the intestine before birth. The relatively normal intestine can be returned to the abdomen and the defect closed in one or two surgical operations shortly after birth. These babies will still be in the intensive care nursery for several weeks before the intestines work well enough to allow feeding and subsequent discharge home. However, these babies eventually feed normally and grow up normally .
Ten to twenty percent of fetuses with gastroschisis will have significant damage to the intestine that greatly complicates their postnatal course and, occasionally, prevents survival. Babies born with damaged intestine can have a very difficult and prolonged stay in the intensive care nursery. These babies often require several surgical operations to return of the intestine to the abdomen using a plastic silo and eventual closure of the abdominal wall. The bowel can be so damaged that parts of it have to be removed. In the worst case, there may not be enough bowel left to absorb food. The most severely affected babies may not survive, and others may be left with a "short bowel syndrome." At the very least, these babies will require nutritional support in the nursery for many months.

A sonogram will accurately diagnose gastroschisis and distinguish it from other similar conditions such as omphalocele. However, the test cannot always tell how severely the bowel damage is. Serial sonograms every few weeks may be necessary to see if the bowel outside the fetus’s body becomes dilated, develops a thick wall, or loses some blood flow.
Since 8 out of 10 fetuses with gastroschisis will not have damaged bowel and will do fine after birth, it is important to be able to identify those 2 fetuses out of the 10 who will have badly damaged bowel and may benefit from fetal intervention before birth. We follow all fetuses with a careful ultrasound examination every week or two to see if we can detect any change in the bowel.

As of the Ultrasound done on Tuesday August 28th all of Dylan's small intestines, most of her large and part of her liver are outside of her body. No big deal!! Just more to be put back in!!

Back Story

(Dylan at 21 weeks)

Here is a quick back story on the life of Miss Dylan Michelle Smith. As most of you know Casey and I were married on January 5th (and 6th) of 2007 in Phoenix. Casey is in the Navy and was to be stationed in Atsugi Japan in March of 2007. He was able to return home for 30 days before leaving the country. And on March 13th 2007 Casey boarded a plane for Tokyo. 4 weeks later we learned the news that we were expecting our first child. As nervous as we were the excitement well outweighed it. The doctors set the due date to December 4th 2007, 40 weeks to the day that my dear Casey left the U.S. In April we had an Ultrasound done, and another one in June where my parents (wayne and michelle), Casey's mom (cheryl) and Meema (my grandmother) were able to attend. It was so neat to get to see the baby kick around and roll and play! The first grandbaby and great grandbaby was up on a giant screen in the doctors office, looking as healthy and as active as could be.

It was time for my second trimester Ultrasound. I had planned it so that Casey's parents could come on their way back from vacation in San Jose. So on July, 20th Mike, Cheryl and I made an early morning trip to Banner Desert Hospital for a routine Ultrasound. I laid on the chair for what seemed like forever, the Sonographer measured everything on little Dylan, from the leg to the heart, we were able to see her little feet kicking around. Dylan was fast asleep at this point. She also hadn't developed her hearing yet, so all of the fun toys that the Sonographer tried to use to get her to move didn't work. 45 minutes later the US tech left the room saying that she was needing Dylan to move. At this point my head started to kill me. Not sure if it was from laying on an uncomfortable chair for so long, or if it was mother's intuition. I had noticed that the Sonographer was very vocal in telling us what things were and then when she would start taking pictures of ABD she wouldn't say anything. Anywho, the US tech came back in and did some more measurements and then left again. I could tell something wasn't right at this point. She came back in minutes later Dr. Mills who is a perinatologist and radiologist. He came in and informed us that Dylan had a severe congenital anomaly (birth defect) known as gastroschisis. This is a abdominal wall defect in which her abdominal wall not closed all the way and her small intestines were now outside of her body. It happens in 1 out of every 10,000 births, but Dr. Mills says it has been on the rise lately. I sat there and just cried. How could this happen? How did this happen? Did something I do cause this? What about Casey? Will the baby make it? What about all of that stuff I have to do at work? Will Casey be able to make it home? How long will she be in the hospital? How am I going to tell my parents?

Dr. Mills went through the ends and outs of Gastroschisis versus an Omphalacele (genetic and chromosonal) and what caused it. Thank goodness that Mike and Cheryl (the in-laws) were with me, because I don't think I heard much after "Your baby has a birth defect". The Sonographer then asked if we wanted to know what the sex of the baby was. I answered with a stern "No". I was excited to make this a part of the pregnancy that Casey and I would get to experience together. We would both be there when the doctor exclaimed "Its a boy!" or "Its a girl!", even though I was sure it was a boy. The Sonographer put all of the US slides on a disk for me so that I could send them to Casey and my parents. She gave me strict instructions to delete slide 80 though because it would tell me if it was a boy or a girl. So with great self discipline I went home and deleted slide 80. I was sending Casey and my father pictures when I got to slide 35 and across the top of the picture it says "I'm a Girl! Girls Rule!" So there it was! Casey and I were having a girl. I can't lie, Fear struck me at first, a Girl? What do you do with a girl? I was convinced we were having a boy, so I hadn't bought any girl stuff. I felt like the worst mom in the world! But all that had to take a back seat for now. My daughter was sick. Was the best care for her in Phoenix? Was I going to go somewhere else? Plus, all of those questions that I thought of earlier still needed to be answered. What was Gastroschisis?