Zoey Life: An Update from Shannon

Monday, June 8, 2009

An Update from Shannon

I thought y'all might like some good news to start your day...

Randy visited Zoey early this morning around 3:00 and, as of 1:10 a.m., she had been OFF the ventilator and doing well with breathing on her own. For those that don't know, she had surgery to correct her omphalocele last night around 9:00. We knew they were going to try to take her off the ventilator but we didn't know whether she would be able to come off of it this soon.

The surgery itself went very well. The surgeon was able to get all of her intestines back in AND close her muscles and skin around it. The fact that he was able to completely close the omphalocele AND get her off the vent so soon as very encouraging signs. I'm almost afraid to say anything about it for fear of "jinxing" our good fortune.

The scans of her heart, brain and kidneys were all normal. She has a small "dimple" on her tail bone but we're not sure whether, or how serious, it may be. She will have to have a scan of her spine at Cook's before she's released. Other than that, she is doing very well and is a little fighter! I thought at first that she looked like Sam but she actually looks a lot like I did as a newborn (poor dear!).

Next up, we'll try to start her feeds in another day or two. This is a HUGE challenge and obstacle for "O" babies so please keep her in your prayers. I will be here until Wednesday, at least. We're not sure how long Zoey will have to stay. Hopefully not too long because I don't know how I'll be able to leave the hospital without her.

I'll keep y'all posted.

In addition to this great news about Zoey, Randy and Alicia wanted me to share some other things with their Grace family.

First of all, thank you to Steve Headland and Brad Marvin for coming to the hospital and praying for and with Alicia and Randy and their extended family. This really meant a lot to them.

Thank you as well to EVERYONE who has prayed for the Sebourn family and baby Zoey. They have seen God's hand move in this situation for the good and ask that you continue to pray for strength for them and Zoey. They have a long road ahead of them and your prayers are greated needed and appreciated at this time.

As some of you may not know, when Dr. Howard (Alicia's doctor that performed the c-section) pulled Zoey out he immediately stated that "Ths is a MIRACLE baby!" Zoey had a very tight knot in her umbilical cord which is very dangerous and it is a miracle she had survived in the womb. The cord was also wrapped around Zoey's little neck twice. The doctor was amazed but Randy and Alicia knew God had performed a miracle and had kept Zoey alive and thriving in Alicia's womb.

She was also born a whopping 8 lbs. 14 ounces, something also pretty amazing for a baby who was 18 days early and had a birth defect. God knew she would need to be big and strong enough to endure a major surgery, just 26 hours after her birth!

Randy has asked for prayers for Alicia, as she is still in major pain from the c-section, and that God will continue to perform miracles in Zoey's life.

Alicia and Randy still have not been able to hold Zoey yet, and this has been very hard on Alicia right now. They are not sure when Zoey will be able to be held by her parents. As Alicia stated in her email, they will begin to try feeding Zoey in the next couple of days. Pray that God will perform another miracle and that Zoey will be a testimony to the doctors and nurses of how powerful prayer is, and that she will have no problems at all feeding normally, and that she will be able to come home sooner than anyone expects her to.

From my point of view, God must have a very special plan for this child of His. Satan has tried every trick in the book to try to steal, kill and destroy this little life and to discourage Randy and Alicia's faith in Him. Little did the enemy know that God was right there the whole time keeping His hand on Zoey and strengthening the faith of her parents. The very fact that Zoey is alive and breathing on her own is a miracle in and of itself and I believe God will use her and the Sebourn family to be a testimony of what prayer and faith can do! They have already seen a present day miracle. We all have.

Shannon Bucek

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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.

Monday, June 8, 2009

An Update from Shannon

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