Yesterday was a very good day... and in many ways a perfect example of how our world has been a series of ups and downs since that first ultrasound so many months ago.
Amanda and I went to St. Louis for several appointments with doctors and surgeons there. If I havent said it before Barnes Childrens Hospital is one of the most fantastic places I have ever been. Around every corner is a unique something or other designed to make the lives of the children they treat more comfortable.
My parents took the boys to Columbia so that allowed Amanda and I to leave about 5:30 AM to make our appointments.
This time we navigated to the childrens parking garage in perfect form and actually made it to the 1st appointment about 15 minutes early. The appointment was for a fetal ecchocardiogram. It was very hard for me to watch. I had no idea what she was looking at most of the time... The tech was very thorough... but before she finished she said she wanted to get the doctor in to look at the results. My spidey senses detected deception and nervousness in her voice. 5 minutes later the Dr. came in and told us that the tech had detected an abnormal tilt and possibly a small defect (hole) in Bayta's heart. After 10 minutes of her running the ultrasound she told us the following. Bayta has a VSD a small hole near one of the valves. It is a normal defect, and one not one that should require surgery... in essence it will heal itself. Normal, Healthy kids have this condition and most of the time it is not detected until after they are born.. because they dont have a million pictures/procedures done on them. As far as the tilt? She simply didnt see it. THe heart looked healthy and in the right position. By finding the small hole in Bayta's heart it prevented us from having a scare after her birth when the doctors eventually heard the murmur.
One down.
The next meeting was an ultrasound. It showed no patent defects. The Doctors were unable to locate the hole in the ultrasound... but they were not specialized enough to detect defects so small. The Dr. who came in at the end of the ultrasound said that it looked like the omphalacele was all liver (no bowel) and that the liver was mostly inside Baytas Chest... They also gave us a card saying that she had grown over a pound since the last ultrasound to 3 pounds 9 ounces. It confirmed we were at 31.6 weeks and that the due date remained October 26th 2009. Bayta is now ranked in the 20th percentile for growth. To put that in perspective our boys were both running about 5 to 10 percent.
The final appointment was 2 hours late. The Dr. was swamped... it was the same Dr. that interpreted our ultrasound during our last visit and Amanda and I both liked him a LOT. Despite being seriously delayed he took a lot of time to talk to us and finally pushed Amanda to agree to deliver at Barnes.
We tentatively agreed to have the baby on Monday October 19th. (My Mothers birth day) We will continue to monitor the baby in Springfield until the 19th or she starts showing distress.
This means that we will be all lone in St. Louis for possibly several months... but it also means that the baby will be getting the best possible care.
That night we went to "the hill" to have dinner and talk about the events of the day. It was a relief to finally have a plan that we could start to put into effect. For the first time in a long time I got to look at my wife. SHe is so incredibly beautiful. At some point she laughed at one of my stupid jokes and it occured to me how lucky I was to have married such a wonderful woman. The boys and I are truly blessed.
Somewhere over dinner she mentioned Sophia as a middle name... "Bayta Sophia Hemphill?" I asked. She said "I always liked Sophia." I smiled and allowed myself to briefly imagine my litle girl and all the days I will not let go to waste if God chooses to give her to me.
That night Amanda slept in the car as we drove back to Springfield. I smiled the whole time.
Saturday, August 29, 2009
Tuesday, August 18, 2009
The nursery is painted!
We finished late last night. The colors are pink on top... with a new chair rail thanks to a lot of help and guidance from my mother (Allena) We painted the lower part white which took 3 coats last night... but we should be able to start moving in the baby furniture from Jackson's room to Bayta's room by tonight....
Jackson is getting a brand new big boys bed... should be pretty exciting.
Darick
Jackson is getting a brand new big boys bed... should be pretty exciting.
Darick
Friday, August 14, 2009
It's a Miracle!
Amanda just got the results from her "long" diabetes test...
She is negative... so we are back on the eating poorly bandwagon!
Yipee!!!
And they say praying doesn't work!
Darick
She is negative... so we are back on the eating poorly bandwagon!
Yipee!!!
And they say praying doesn't work!
Darick
Just when we thought it couldn't get any worse!
Amanda has failed her Gestational Diabetes test!
The test she took is a "rough" predictor, so today she has to go in for a three hour test. Last night I took her out for a Pineapple Whip since it will be 3 or four months until she can have sweet sugary snacks again.
This is NOT related to the Omphalocele. She was diagnosed with gestational diabetes with one of our sons... she then has to basically watch her diet, calories, and check her blood sugar for the next few months. Not terrible... just annoying.
The test she took is a "rough" predictor, so today she has to go in for a three hour test. Last night I took her out for a Pineapple Whip since it will be 3 or four months until she can have sweet sugary snacks again.
This is NOT related to the Omphalocele. She was diagnosed with gestational diabetes with one of our sons... she then has to basically watch her diet, calories, and check her blood sugar for the next few months. Not terrible... just annoying.
Tuesday, August 11, 2009
Echocardigram finished
Bayta still looks good! She now weighs 2.9 lbs.
The results will be in in a few weeks... So again... We wait and pray.
Judy (amandas mom) is up today and tomorrow... She will take the boys to Arkansas for a week of Grammy time.
We will try to get a lot of the nesting things done. Painting the babys room is definitely on daddy's to do list.
The results will be in in a few weeks... So again... We wait and pray.
Judy (amandas mom) is up today and tomorrow... She will take the boys to Arkansas for a week of Grammy time.
We will try to get a lot of the nesting things done. Painting the babys room is definitely on daddy's to do list.
Sunday, August 9, 2009
What is Omphalocele?
Here are some short articles we found helpful in a basic way for explaining what is going on with "Bayta"
Definition of Omphalocele
Omphalocele: A birth defect in which part of the intestine, covered only by a thin transparent membrane, protrudes outside the abdomen at the umbilicus. The underlying error is a failure during embryonic development for a section of the intestines (the midgut) to return from outside the abdomen and reenter the abdomen, as it should. The opening in the abdominal wall cannot close because, to do so, would pinch off part of the intestines. An omphalolocele must be repaired by surgery.
With an omphalocele, the part of the intestine that sticks out is covered by two thin transparent membranes called the amnion (the amniotic membrane) and peritoneum (the abdominal membrane). The liver and spleen may also be within the omphalocele.
An omphalocele is caused by an error in the normal embryonic development of the intestinal tract. During embryogenesis (the time during which the embryo forms), there are initially three distinct portions of the intestinal tract (the foregut, midgut and hindgut) that extend the length of the embryo. Much of the midgut is then herniated (protruded) outside the abdomen at the umbilicus (belly button). The midgut later reenters the abdomen (belly) and the opening in the abdominal wall closes. The error responsible for an omphalocele is a failure for the midgut to return and reenter the abdomen. The opening in the abdominal wall cannot close because to do so would pinch off part of the intestines.
About 1 in 5,000 babies is born with an omphalocele. The omphalocele can be an isolated birth defect (all by itself). Or it may occur in children who have additional malformations as for example a congenital heart defect. Omphalocele is a characteristic malformation in certain chromosome abnormalities as the trisomy 13 (Patau) syndrome and the trisomy 18 (Edwards) syndrome. It also is seen in some genetic disorders such the Beckwith-Wiedemann syndrome.
"Omphalo-" indicates a relationship to the umbilicus (the navel) and the suffix "-cele" refers to a hernia or rupture, so omphalocele literally = a hernia or rupture at the umbilicus.
Illustrations
Infant omphalocele
Omphalocele repair - series
Definition Return to top
An omphalocele is a birth defect in which the infant's intestine or other abdominal organs stick out of the belly button (navel). In babies with an omphalocele, the intestines are covered only by a thin layer of tissue and can be easily seen.
An omphalocele is a type of hernia. Hernia means "rupture.”
See also: Umbilical hernia
Causes Return to top
An omphalocele develops as a baby grows inside the mother's womb. The muscles in the abdominal wall (umbilical ring) do not close properly. As a result, the intestine remains outside the umbilical cord.
Approximately 25 - 40% of infants with an omphalocele have other birth defects. They may include genetic problems (chromosomal abnormalities), congenital diaphragmatic hernia, and heart defects.
Symptoms Return to top
An omphalocele can be clearly seen, because the abdominal contents stick out (protrude) through the belly button area.
There are different sizes of omphaloceles. In small ones, only the intestines stick out. In larger ones, the liver or spleen may stick out of the body as well.
Exams and Tests Return to top
Prenatal ultrasounds often identify infants with an omphalocele before birth. Otherwise, physical examination of the infant is sufficient for your health care provider to diagnose this condition. Testing is usually not necessary.
Treatment Return to top
Omphaloceles are repaired with surgery, although not always immediately. A sac protects the abdominal contents and allows time for other more serious problems (such as heart defects) to be dealt with first, if necessary.
To fix an omphalocele, the sac is covered with a special synthetic material, which is then stitched in place. Slowly, over time, the abdominal contents are pushed into the abdomen.
When the omphalocele can comfortably fit within the abdominal cavity, the synthetic material is removed and the abdomen is closed.
Sometimes the omphalocele is so large that it cannot be place back inside the infants abdomen. The skin around the omphalocele grows and eventually covers the omphalocele. The abdominal muscles and skin can be repaired when the child is older in order to achieve a better cosmetic outcome.
Outlook (Prognosis) Return to top
Complete recovery is expected after surgery for an omphalocele. However, omphaloceles are frequently associated with other birth defects. How well a child does depends on any other conditions.
If the omphalocele is identified before birth, the mother should be closely monitored to make sure the unborn baby remains healthy. Plans should be made for careful delivery and immediate management of the problem after birth. The baby should be delivered in a medical center that is skilled with repairing the omphalocele. The baby's outcome is improved if he or she does not need to be taken to another center for further treatment.
Parents should consider screening the unborn baby for other genetic problems that are associated with this condition.
Possible Complications Return to top
Death of the intestinal tissue
Intestinal infection
When to Contact a Medical Professional Return to top
This problem is diagnosed and repaired in the hospital at birth. After returning home, call your health care provider if the infant develops any of these symptoms:
Decreased bowel movements
Feeding problems
Fever
Green or yellowish green vomit
Swollen belly area
Vomiting (different than normal baby spit-up)
Worrisome behavioral changes
References Return to top
Townsend CM, Beauchamp RD, Evers BM, Mattox KL. Sabiston Textbook of Surgery, 17th ed. St. Louis, M0: WB Saunders; 2004:2116-2117.
Ledbetter DJ . Gastroschisis and omphalocele. Surg Clin North Am. April 2006; 86(2): 249-60, vii.
Update Date: 10/8/2007
Definition of Omphalocele
Omphalocele: A birth defect in which part of the intestine, covered only by a thin transparent membrane, protrudes outside the abdomen at the umbilicus. The underlying error is a failure during embryonic development for a section of the intestines (the midgut) to return from outside the abdomen and reenter the abdomen, as it should. The opening in the abdominal wall cannot close because, to do so, would pinch off part of the intestines. An omphalolocele must be repaired by surgery.
With an omphalocele, the part of the intestine that sticks out is covered by two thin transparent membranes called the amnion (the amniotic membrane) and peritoneum (the abdominal membrane). The liver and spleen may also be within the omphalocele.
An omphalocele is caused by an error in the normal embryonic development of the intestinal tract. During embryogenesis (the time during which the embryo forms), there are initially three distinct portions of the intestinal tract (the foregut, midgut and hindgut) that extend the length of the embryo. Much of the midgut is then herniated (protruded) outside the abdomen at the umbilicus (belly button). The midgut later reenters the abdomen (belly) and the opening in the abdominal wall closes. The error responsible for an omphalocele is a failure for the midgut to return and reenter the abdomen. The opening in the abdominal wall cannot close because to do so would pinch off part of the intestines.
About 1 in 5,000 babies is born with an omphalocele. The omphalocele can be an isolated birth defect (all by itself). Or it may occur in children who have additional malformations as for example a congenital heart defect. Omphalocele is a characteristic malformation in certain chromosome abnormalities as the trisomy 13 (Patau) syndrome and the trisomy 18 (Edwards) syndrome. It also is seen in some genetic disorders such the Beckwith-Wiedemann syndrome.
"Omphalo-" indicates a relationship to the umbilicus (the navel) and the suffix "-cele" refers to a hernia or rupture, so omphalocele literally = a hernia or rupture at the umbilicus.
Illustrations
Infant omphalocele
Omphalocele repair - series
Definition Return to top
An omphalocele is a birth defect in which the infant's intestine or other abdominal organs stick out of the belly button (navel). In babies with an omphalocele, the intestines are covered only by a thin layer of tissue and can be easily seen.
An omphalocele is a type of hernia. Hernia means "rupture.”
See also: Umbilical hernia
Causes Return to top
An omphalocele develops as a baby grows inside the mother's womb. The muscles in the abdominal wall (umbilical ring) do not close properly. As a result, the intestine remains outside the umbilical cord.
Approximately 25 - 40% of infants with an omphalocele have other birth defects. They may include genetic problems (chromosomal abnormalities), congenital diaphragmatic hernia, and heart defects.
Symptoms Return to top
An omphalocele can be clearly seen, because the abdominal contents stick out (protrude) through the belly button area.
There are different sizes of omphaloceles. In small ones, only the intestines stick out. In larger ones, the liver or spleen may stick out of the body as well.
Exams and Tests Return to top
Prenatal ultrasounds often identify infants with an omphalocele before birth. Otherwise, physical examination of the infant is sufficient for your health care provider to diagnose this condition. Testing is usually not necessary.
Treatment Return to top
Omphaloceles are repaired with surgery, although not always immediately. A sac protects the abdominal contents and allows time for other more serious problems (such as heart defects) to be dealt with first, if necessary.
To fix an omphalocele, the sac is covered with a special synthetic material, which is then stitched in place. Slowly, over time, the abdominal contents are pushed into the abdomen.
When the omphalocele can comfortably fit within the abdominal cavity, the synthetic material is removed and the abdomen is closed.
Sometimes the omphalocele is so large that it cannot be place back inside the infants abdomen. The skin around the omphalocele grows and eventually covers the omphalocele. The abdominal muscles and skin can be repaired when the child is older in order to achieve a better cosmetic outcome.
Outlook (Prognosis) Return to top
Complete recovery is expected after surgery for an omphalocele. However, omphaloceles are frequently associated with other birth defects. How well a child does depends on any other conditions.
If the omphalocele is identified before birth, the mother should be closely monitored to make sure the unborn baby remains healthy. Plans should be made for careful delivery and immediate management of the problem after birth. The baby should be delivered in a medical center that is skilled with repairing the omphalocele. The baby's outcome is improved if he or she does not need to be taken to another center for further treatment.
Parents should consider screening the unborn baby for other genetic problems that are associated with this condition.
Possible Complications Return to top
Death of the intestinal tissue
Intestinal infection
When to Contact a Medical Professional Return to top
This problem is diagnosed and repaired in the hospital at birth. After returning home, call your health care provider if the infant develops any of these symptoms:
Decreased bowel movements
Feeding problems
Fever
Green or yellowish green vomit
Swollen belly area
Vomiting (different than normal baby spit-up)
Worrisome behavioral changes
References Return to top
Townsend CM, Beauchamp RD, Evers BM, Mattox KL. Sabiston Textbook of Surgery, 17th ed. St. Louis, M0: WB Saunders; 2004:2116-2117.
Ledbetter DJ . Gastroschisis and omphalocele. Surg Clin North Am. April 2006; 86(2): 249-60, vii.
Update Date: 10/8/2007
Whats next
Tomorrow we have an appointment scheduled at St. Johns to have a fetal ecchocardiogram performed on Bayta. This test will hopefully give us some more infor on how her heart is doing. Often times even perfectly healthy babies have small holes or "leaks" in their hearts that heal themselves naturally. Because we have done so many fetal ultrasounds they often find the "minor" defects when looking for the big ones. Our fetal medicine specialist says it is unusual for children with this condition to "grow" a heart condition so if we make it though this test we will feel a lot better about her outcome.
They will again measure all the baby's limbs, look at brain structure and spinal structure and the state of the omphalocele itself. The other issue with the head is a condition called Pentalogy of Cantrell in which the heart tilts to a weird angle because the diaphram does not support it because the liver and bowels are not in the right position.
After the test tomorrow... we have to make a decison about where to have her... Here in Springfield, or Possibly St. Louis... More about that in anoter blog!
Darick
They will again measure all the baby's limbs, look at brain structure and spinal structure and the state of the omphalocele itself. The other issue with the head is a condition called Pentalogy of Cantrell in which the heart tilts to a weird angle because the diaphram does not support it because the liver and bowels are not in the right position.
After the test tomorrow... we have to make a decison about where to have her... Here in Springfield, or Possibly St. Louis... More about that in anoter blog!
Darick
Tuesday, August 4, 2009
Open Letter to Friends and Family (in process)
Dear Friends and Family,
For many months I have been planning to send out a letter like this, but have been hesitant to do so until we got more answers. Amanda and I just returned from St. Louis where we visited with doctors and surgeons at Barnes-Jewish Hospital and St. Louis Children’s Hospital. Each week since March we were one week away from another test that might shed light on what was going on with our unborn child, Bayta.
On March 1st while having a standard ultrasound performed, we found out that our unborn child has a rare condition known as Gastroschisis. (Pronounced GAS-TRO-SKI-SIS) The good news was that there is an 85% survival rate for children born with this condition. There are also no (or few) long term side effects provided the baby survives the birth and first few weeks or months in the NICU. (Neonatal Intensive Care Unit)
While we were of course devastated, the medical staff assured us that it could always be worse and that we were lucky our child did not have another condition called Omphalocele. Omphalocele is often associated with severe genetic disorders including Down Syndrome, congenital birth defects like cardiac, kidney, spine and lung deformities, and premature death.
On May 19th we had another ultrasound. This one let us know that in October we will be the proud parents of a baby girl. However, the doctors at that time changed our diagnosis from Gastroschisis to the dreaded Omphalocele.
As you can imagine this has been a difficult for Amanda and I. We are used to being in control of our environment and our world. We have also lived very charmed and uneventful life with our first two children Harrison (age 4) and Jackson (age 2). From the time we found out about the diagnosis we have read and researched everything we could on Omphaloceles. We have posted some informative websites on our blog if you want to know more about this condition.
This pregnancy has not been without its good news. The results from an amniotic fluid test eliminated the possibility of many genetic disorders. Because of the high risk nature of the pregnancy we probably have more pictures of our daughter in utero than we do of our sons. So far the evidence is not pointing out any obvious damage to the heart, kidneys, stomach, lungs, brain, face, and limbs. (Unfortunately every time we get a good review the doctors immediately follow it up with “but we might have missed something.”)
The fact that we are still a functioning family is a testament to the support we have received from our friends and families. When we first found out about her birth defect we were sponsoring a bible study group in our home that helped reinforce our faith. God has always been good to us, and blessed us in ways we can not even fathom. Amanda was able to return to her job at St. John’s Hospital which allowed us to have less expensive insurance with better benefits. The initial estimates are that this baby will cost close to a million dollars before she leaves the NICU.
After hearing about our little girl, the first thing people want to know is how they can help. The only thing we can ask for is your prayers. If that isn’t enough, please feel free to make a donation to Ronald McDonald House. They are truly a blessing for families like ours with seriously ill children. I will create a website shortly where I will blog about what is happening so Amanda is not asked to “tell the story” again and again.
For many months I have been planning to send out a letter like this, but have been hesitant to do so until we got more answers. Amanda and I just returned from St. Louis where we visited with doctors and surgeons at Barnes-Jewish Hospital and St. Louis Children’s Hospital. Each week since March we were one week away from another test that might shed light on what was going on with our unborn child, Bayta.
On March 1st while having a standard ultrasound performed, we found out that our unborn child has a rare condition known as Gastroschisis. (Pronounced GAS-TRO-SKI-SIS) The good news was that there is an 85% survival rate for children born with this condition. There are also no (or few) long term side effects provided the baby survives the birth and first few weeks or months in the NICU. (Neonatal Intensive Care Unit)
While we were of course devastated, the medical staff assured us that it could always be worse and that we were lucky our child did not have another condition called Omphalocele. Omphalocele is often associated with severe genetic disorders including Down Syndrome, congenital birth defects like cardiac, kidney, spine and lung deformities, and premature death.
On May 19th we had another ultrasound. This one let us know that in October we will be the proud parents of a baby girl. However, the doctors at that time changed our diagnosis from Gastroschisis to the dreaded Omphalocele.
As you can imagine this has been a difficult for Amanda and I. We are used to being in control of our environment and our world. We have also lived very charmed and uneventful life with our first two children Harrison (age 4) and Jackson (age 2). From the time we found out about the diagnosis we have read and researched everything we could on Omphaloceles. We have posted some informative websites on our blog if you want to know more about this condition.
This pregnancy has not been without its good news. The results from an amniotic fluid test eliminated the possibility of many genetic disorders. Because of the high risk nature of the pregnancy we probably have more pictures of our daughter in utero than we do of our sons. So far the evidence is not pointing out any obvious damage to the heart, kidneys, stomach, lungs, brain, face, and limbs. (Unfortunately every time we get a good review the doctors immediately follow it up with “but we might have missed something.”)
The fact that we are still a functioning family is a testament to the support we have received from our friends and families. When we first found out about her birth defect we were sponsoring a bible study group in our home that helped reinforce our faith. God has always been good to us, and blessed us in ways we can not even fathom. Amanda was able to return to her job at St. John’s Hospital which allowed us to have less expensive insurance with better benefits. The initial estimates are that this baby will cost close to a million dollars before she leaves the NICU.
After hearing about our little girl, the first thing people want to know is how they can help. The only thing we can ask for is your prayers. If that isn’t enough, please feel free to make a donation to Ronald McDonald House. They are truly a blessing for families like ours with seriously ill children. I will create a website shortly where I will blog about what is happening so Amanda is not asked to “tell the story” again and again.
Saturday, August 1, 2009
Bayta's Battles Chapter 1
Hello! This is a blog to document the trials and tribulations of my family as we deal with our daughter's birth after having been diagnosed with a rare condtion called Omphalecele. In the days and weeks ahead, we hope to provide our friends and families with basic information on Omphalacele, updates on Bayta's condition and her mother and fathers mental decline.
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