Zoey Life: April 21st Update to Family and Friends

Wednesday, May 20, 2009

April 21st Update to Family and Friends

Not my finest moment...

I was just about to email y’all but was trying to get to a “better place” first…

My blood pressure was back down to 132/78 and Dr. Howard was happy with that. So, we’ll be bringing Sam over by 6:00 every Friday and picking him up around 6:00 (that’d be PM) on Sunday for the next 7 weeks, or so. J

The baby did great on the non-stress test. We saw heart rate accelerations and decelerations, just like we’re supposed to. She did good on the bio-physical profile, also, but not without some stress. They didn’t see her taking any practice breaths. That’s one of the things they “grade” for on the test. They have to watch for 30 minutes without seeing her take a breath before they start to worry. About 10 minutes in, without her taking a breath, the sonographer grabbed a cattle prod and shocked my belly.

I kid you not.

Finally, a few minutes after getting shocked, Zoey woke up and started breathing.

As the sonographer was doing the ultrasound, I noticed that she was taking a long time looking at Zoey’s brain. Then she’d move away but always go back to her brain. I’m not stupid… I know that when they spend a long time looking at one thing in particular, there’s a reason. Of course, the sonographer couldn’t tell me anything other than, “I’m just trying to get some good pictures.”

Oh how I hate being lied to.

So, I had to wait forever for the doctor to come in and, sure enough, he’s holding a picture of Zoey’s brain with an arrow and a question mark that the sonographer had drawn. I asked him what was going on with her brain and he said the sonographer thought she saw “something” around the cerebellum area of Zoey’s brain but he (Dr. Howard) didn’t see anything.

Keep in mind that if she were to have one of the underlying disorders that I’ve mentioned before, there would possibly be evidence of it (such as cysts, etc.) on the brain. So I KNOW that looking closely at brain = not good.

I feel somewhat (and I mean…only a very little bit) reassured that the doctor said he didn’t see anything. The truth is, until she is here, we just won’t know the true extent of any other problems, if any. And I am hoping and praying there aren’t any…but until she’s here and I can see for myself, nothing much is going to reassure me that she is and will be fine.

SIXTY percent of kids with omphaloceles have other problems. THIRTY percent don’t survive.

Some days I do better with these stats than others. This is obviously not a good day. Sorry for that…

Just pray for me.

The stress of this is getting the best of me. I thought I’d feel better with the closer monitoring but, truthfully, I don’t. Every week is just more and new stress. Like waiting for the other shoe to drop. Wondering what bad news we’ll get this time. For example, I found out yesterday that, even though omphaloceles typically don’t’ get bigger, the sac that her organs are in could rupture. Nice, huh? And there’s not a freaking thing I can do to prevent it. There’s not a single thing I can do to protect my baby. I don’t do helpless. Yet that’s what I am… exactly HELPLESS to help my child.

I’m also not good at “what ifs”. I like knowing. And planning. And being prepared. I have no idea how to handle seven more weeks of this not knowing. I’m ready to deliver her so we can see what we’re dealing with here (and truthfully, I’m ready to get her out of the womb so someone else can be responsible for things for a while). I think I’ll be better able to deal with the…certainties once she’s here. It’s the uncertainty right now that I’m not at all equipped to deal with. I’m just not strong enough.

I’m tired.

Just totally exhausted.

Anyway, sorry for the big “dump” there. Like I said, was hoping to get to a better place…

Just pray for me. Pray for Zoey.

A~

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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.

Wednesday, May 20, 2009

April 21st Update to Family and Friends

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