Zoey Life: First Pedi Appointment

Friday, June 19, 2009

First Pedi Appointment

Zoey had her first appointment with Dr. D, our pediatrician, on Monday. Her appointment went very well and we can chalk Dr. D up to another doctor amazed by our little miracle girl. He couldn't believe how well she is doing. He told Randy and I that he had never seen a baby with an omphalocele leave the hospital so quickly. He was also pretty impressed with Dr. Vaughan's (Zoey's surgeon) handiwork. Dr. D said he had never seen a doctor re-attach the umbilical cord/stump after closing an omphalocele. Dr. Vaughan did this in order to give Zoey a belly button. The cord fell off yesterday and indeed she does have a cute little outie belly button! She still has some healing to do but overall her closure looks very good. Dr. Vaughan is the MAN! And a good Christian man at that! I am so thankful for the awesome doctors and nurses that God has sent our way.

Zoey weighed in at a whopping 9 lbs, 7 oz. She was up 5 oz from when she was discharged from the hospital on Friday (have we really been home a week, now?) and 9 oz from her birth weight. Pretty impressive for a little girl that did not get to eat at all for the first 3 days of her life. Dr. D said he only looks for newborns to have regained their birth weight by 2 weeks old and she had already passed her birth weight so no worries there. What can I say? The girl likes to eat. Just like her momma. She also rarely spits up and has never had a vomiting episode so another praise!

Zoey is continuing to do so well. She is just amazing. She has overcome every obstacle thrown her way in her short little life. The final piece of the puzzle that we are waiting on are the results from her chromosome testing. Obviously, we have been able to rule out Trisomy 13 and 18 (those considered "incompatable with life") but we're waiting for the official results which will rule out Trisomy 21, Beckwith-Weideman syndrome, and other chromosomal disorders. Zoey's neonatologist should call us with the results on Monday. Please continue praying for our little girl. Specifically, that her bloodwork will show the perfect 46xx chromosomes of a healthy baby girl!

Thanks again for all your continued prayers for our girl! Her life will serve as a testimony to the power of prayer. It already is. It has brought at least one person back to church (you know who you are. You know I'm proud of you. You know I'm praying for you. And you know I love you!)

I'm going to go ahead and say that if Zoey's life and testimony bring one person to Christ, or back to Christ, then this will all have been worth it.

P.S. Pictures really are coming soon. I promise! Just as soon as I can find my camera cord...

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OMPHALOCELE

What is an omphalocele?

An omphalocele is a birth defect, which is an abnormality that occurs before birth as a fetus is forming in its mother's uterus. Some of the abdominal organs protrude through an opening in the abdominal muscles in the area of the umbilical cord. A translucent membrane covers the protruding organs.
The omphalocele may be small, with only a portion of the intestine protruding outside the abdominal cavity, or large, with most of the abdominal organs (including intestine, liver, and spleen) present outside the abdominal cavity. Further, the abdominal cavity itself may be small due to underdevelopment during pregnancy.

What causes an omphalocele?

As a fetus is growing in the mother's uterus before birth, different organ systems are developing and maturing. Between the 6th and the 10th weeks of pregnancy, the intestines actually project into the umbilical cord as they are growing. By the 11th week of development, the intestines should return to the abdomen. When the fetus is growing and developing during pregnancy, there is a small opening in the abdominal muscles that the umbilical cord can pass through, connecting the mother to the fetus. As the fetus matures, the abdominal muscles should meet in the middle and grow together, closing off this opening. An omphalocele occurs when the abdominal organs do not return to the abdominal cavity as they should.

It is not known what causes omphalocele. Steps that normally happen in the development of the abdominal organs and muscles simply did not happen properly. It is not known to be caused by anything the mother did during pregnancy.

Who is at risk for developing an omphalocele?

When an omphalocele is isolated (no other birth defects are present), the risk for it to happen in a future pregnancy is one percent or one in 100. There are some families that have been reported to have an omphalocele inherited as an autosomal dominant or X-linked recessive trait. In these cases, the chance for reoccurrence would be higher.

Many babies born with an omphalocele also have other abnormalities. The chance for reoccurrence depends upon the underlying disorder:

Thirty percent have a chromosomal (genetic) abnormality, most commonly Trisomy 13, Trisomy 18, Trisomy 21, Turner syndrome, or triploidy.

Some infants with omphalocele have a syndrome known as Beckwith-Wiedemann syndrome.

More than half of babies with omphalocele have abnormalities of other organs or body parts, most commonly the spine, digestive system, heart, urinary system, and limbs.

How often does an omphalocele occur?

A "small" type omphalocele (involving protrusion of a small portion of the intestine only) occurs in one out of every 5,000 live births.

A "large" type omphalocele (involving protrusion of the intestines, liver, and other organs) occurs in one out of every 10,000 live births.

More boys than girls are affected with omphalocele.

Why is an omphalocele a concern?

Since some or all of the abdominal organs are outside the body, infection is a concern, especially if the protective membrane around the organs breaks. Also, an organ may lose its blood supply if it becomes pinched or twisted. A loss of blood flow can damage the affected organ.

How is an omphalocele diagnosed?

Omphalocele can often be detected on fetal ultrasound in the second and third trimesters of pregnancy. A fetal echocardiogram (ultrasound of the heart) may also be done to check for heart abnormalities before the baby is born.

After birth, the omphalocele can be noted by the physician during the physical examination. X-rays (diagnostic tests which use invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film) may also be done after birth to evaluate abnormalities of other organs or body parts.

Treatment for an omphalocele:

Specific treatment for an omphalocele will be determined by your baby's physician based on the following:

your baby's gestational age, overall health, and medical history
the extent of the condition

your baby's tolerance for specific medications, procedures, or therapies

expectations for the course of the condition

your opinion and preference

For a "small" omphalocele (only a portion of the intestine protruding outside the abdominal cavity), shortly after birth, an operation is done to return the organs to the abdomen and close the opening in the abdominal wall.

For a "large" omphalocele (most of the abdominal organs, including intestine, liver, and spleen are present outside the abdominal cavity), the repair is done in "stages" and may include the following:

Initially, sterile, protective sheeting is placed over the abdominal organs.

Because the abdomen may be small and underdeveloped, it may not be able to hold all of the organs at once. Therefore, the exposed organs are gradually moved back into the abdomen over several days or weeks.

The abdominal wall is closed surgically once the organs have been returned to the abdominal cavity.

Because the abdominal cavity may be small and underdeveloped, and the organs may be swollen, a baby with an omphalocele may have breathing difficulties as the organs are returned to the abdomen. Your baby may need help from a breathing machine called a mechanical ventilator while the swelling is decreasing and the size of the abdominal cavity is increasing.

What is the long-term outlook for a baby born with an omphalocele?

Problems in the future often depend on:

the size of the omphalocele.

if there was a loss of blood flow to part of the intestine or other organs.

the extent of other abnormalities.

Babies who have damage to the intestines or other abdominal organs may have long-term problems with digestion, elimination, and infection.

Friday, June 19, 2009

First Pedi Appointment

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