Talked to Dr. Hirsch today about the ECHO results. While the ventricular function has improved since after surgery, it is still considered moderate to severe in function. After surgery we were also told that Ava's mitral valve was severely leaky. Now it is moderately leaky so it is improving. They hope that as she gains function in her ventricle this will continue to improve. Her left lung was collapsed from lack of use while on BYpass and ECMO. It is now better after conditioning for the last 24 hours. If her lung xray looks the same or better, they plan to "trial" her off ECMO (the heart/lung machine) tomorrow for a short time. This is to see how her heart/blood pressure tolerates it. They have told us that they are not expecting a lot from the trial because her ventricle is still weak. They hope to gain more information from the trial, however. Dr. Hirsch and the Cardiologist say they are "cautiously optimistic" that she will come off of ECMO at some point. We just need to get to a point where her ventricular function can tolerate the work on its own. At this point I am hoping for the best but preparing for the worst.
Thank you for keeping Ava and our family in your prayers during this incredibly difficult time. Happy Birthday to my dear husband.
Thursday, December 27, 2007
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Ava with Mommy & Daddy
Isn't she beautiful!
It's A Girl!
Hello everyone and welcome to Ava Christine's Blog.
First a little info about the new edition to our family.
This beautiful little girl comes to our family after many years of trying on her parents part as well as her being the first girl in 19 years. Yes 19 years! So to say that she is going to be a little spoiled is putting it very lightly.
Ava Christine was welcomed into this world on September 29 2007 by her mommy Jamie, Daddy Jamie, big brother Brayden, grandparents, aunts, uncles, cousins, and numerous friends. Shortly after Ava's arrival the wonderful medical staff at Memorial hospital of South Bend found what they called a murmur in Ava's heart. After some testing little Ava was transported to Motts' Children Hospital at the University of Michigan in Ann Arbor. Jamie and Jamie were informed that little Ava has a heart defect that could be life threatening and that she needed to undergo open heart surgery to fix the defects. So, on Tuesday October 2 2007 Ava was operated on by the wonderful medical staff at the U of M. What this team of doctors did to Ava is incredible. First of all Jamie explained to me over the phone today just what problems Ava's heart has endured. Ava's heart has a couple of different problems. The first is known as Interrupted Aortic Arch. The following info about interrupted aortic arch is best explained by the U of M Cardiac website, "Interrupted aortic arch is a very rare heart defect that occurs when the aorta does not develop normally while the baby is in the mother’s womb. It comprises about 1% of all congenital heart defects. It usually occurs along with other heart problems such as truncus arteriosus, ventricular septal defect, transposition of the great arteries, and aortic stenosis.The aorta is the large blood vessel that arises from the left side of the normal heart and takes red blood out to the body. The first part of the aorta, called the ascending aorta (1) arises upwards. It then curves leftward forming the aortic arch (2). The aorta then curves downward towards the lower body, and this part is called the descending aorta (3). Three blood vessels exit from the aortic arch and supply the head and arms with red blood. These vessels are called the innominate artery (4), the left carotid artery (5), and the left subclavian artery (6).In babies with interrupted aortic arch, there is a complete blockage between the ascending and the descending aorta (1). This means that there is no direct way for red blood leaving the heart to reach the body parts that are "downstream" from the blockage. The site of the defect varies (2) and may or may not involve the take-off of the head and neck vessels. In most babies with interrupted aortic arch (70-90%) there is also a large ventricular septal defect (3).In newborns with interrupted aortic arch, the only way for blood to bypass the blockage is via the patent ductus arteriosus (4). Prior to birth, this small blood vessel permits blood to by-pass the baby’s fluid-filled lungs. One or two days after birth, this vessel usually closes on its own. In a baby with interrupted aortic arch, if the duct closes, blood can no longer reach the lower body. This can cause the baby to suddenly become very ill. Therefore, after the diagnosis is made, a medicine called prostaglandin is used to keep the ductus arteriosus open until surgery". (http://www.med.umich.edu/cvc/mchc/parint.htm)
So how did the doctors fix this? "Interrupted aortic arch is a serious heart defect that requires surgery soon after birth. The goal of surgery is to create remove the blockage. This used to be done in a two-stage operation but is now done most of the time in one stage. The two ends of the aorta are sewn together (1) and the patent ductus arterious (2) is tied off. Sometimes a patch is needed to reinforce the repair. If present, a patch is sewn over the VSD (3)". (http://www.med.umich.edu/cvc/mchc/parint.htm)
In #1 of the picture below is the part of Ava' heart that was repaired.
First a little info about the new edition to our family.
This beautiful little girl comes to our family after many years of trying on her parents part as well as her being the first girl in 19 years. Yes 19 years! So to say that she is going to be a little spoiled is putting it very lightly.
Ava Christine was welcomed into this world on September 29 2007 by her mommy Jamie, Daddy Jamie, big brother Brayden, grandparents, aunts, uncles, cousins, and numerous friends. Shortly after Ava's arrival the wonderful medical staff at Memorial hospital of South Bend found what they called a murmur in Ava's heart. After some testing little Ava was transported to Motts' Children Hospital at the University of Michigan in Ann Arbor. Jamie and Jamie were informed that little Ava has a heart defect that could be life threatening and that she needed to undergo open heart surgery to fix the defects. So, on Tuesday October 2 2007 Ava was operated on by the wonderful medical staff at the U of M. What this team of doctors did to Ava is incredible. First of all Jamie explained to me over the phone today just what problems Ava's heart has endured. Ava's heart has a couple of different problems. The first is known as Interrupted Aortic Arch. The following info about interrupted aortic arch is best explained by the U of M Cardiac website, "Interrupted aortic arch is a very rare heart defect that occurs when the aorta does not develop normally while the baby is in the mother’s womb. It comprises about 1% of all congenital heart defects. It usually occurs along with other heart problems such as truncus arteriosus, ventricular septal defect, transposition of the great arteries, and aortic stenosis.The aorta is the large blood vessel that arises from the left side of the normal heart and takes red blood out to the body. The first part of the aorta, called the ascending aorta (1) arises upwards. It then curves leftward forming the aortic arch (2). The aorta then curves downward towards the lower body, and this part is called the descending aorta (3). Three blood vessels exit from the aortic arch and supply the head and arms with red blood. These vessels are called the innominate artery (4), the left carotid artery (5), and the left subclavian artery (6).In babies with interrupted aortic arch, there is a complete blockage between the ascending and the descending aorta (1). This means that there is no direct way for red blood leaving the heart to reach the body parts that are "downstream" from the blockage. The site of the defect varies (2) and may or may not involve the take-off of the head and neck vessels. In most babies with interrupted aortic arch (70-90%) there is also a large ventricular septal defect (3).In newborns with interrupted aortic arch, the only way for blood to bypass the blockage is via the patent ductus arteriosus (4). Prior to birth, this small blood vessel permits blood to by-pass the baby’s fluid-filled lungs. One or two days after birth, this vessel usually closes on its own. In a baby with interrupted aortic arch, if the duct closes, blood can no longer reach the lower body. This can cause the baby to suddenly become very ill. Therefore, after the diagnosis is made, a medicine called prostaglandin is used to keep the ductus arteriosus open until surgery". (http://www.med.umich.edu/cvc/mchc/parint.htm)
So how did the doctors fix this? "Interrupted aortic arch is a serious heart defect that requires surgery soon after birth. The goal of surgery is to create remove the blockage. This used to be done in a two-stage operation but is now done most of the time in one stage. The two ends of the aorta are sewn together (1) and the patent ductus arterious (2) is tied off. Sometimes a patch is needed to reinforce the repair. If present, a patch is sewn over the VSD (3)". (http://www.med.umich.edu/cvc/mchc/parint.htm)
In #1 of the picture below is the part of Ava' heart that was repaired.
Before surgery
The Next Step
The next step in repairing Ava's heart was to fix what is known as Truncus Arteriosus. Truncus arteriosus is "characterized by a large ventricular septal defect over which a large, single great vessel (truncus) arises. This single great vessel carries blood both to the body and to the lungs". (http://www.americanheart.org/presenter.jhtml?identifier=11073) Below is a picture of what Ava's heart was like before surgery.
Before Surgery
After Surgery
The above picture shows what the surgeon did to repair Ava's heart. "Surgery is required to close the ventricular septal defect and separate blood flow to the body from blood flow to the lungs. This is generally done early in infancy to prevent high blood pressure from damaging the lungs' arteries. A patch is used to close the ventricular defect. The pulmonary arteries are then disconnected from the single great vessel and a tube (a conduit or tunnel) is placed from the right ventricle to these pulmonary arteries. This is sometimes called a Rastelli repair". (http://www.americanheart.org/presenter.jhtml?identifier=11073)
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26 comments:
You are constantly in my thoughts and prayers. Improvements in her own good time - keep it up Ava!
Happy Birthday Jamie.
Lots of love and prayers, Emily
One step at a time. Ava has shown us before that she does things in "Ava time" and that is okay. We also hope for the best and continue to pray for you all. We will pray for a good "trial" tomorrow.
Take care of yourself-
April
Happy Birthday, Boy Jamie.
We will pray that only positives come out of the trial tomorrow.
Love,
The Asmus'
Happy Birthday Jamie!!! Prayers are continuing and we hope you get a great report tomorrow. Ava has surprised everyone so many times so keep thinking positively.
All Our Love,
The Altergotts
Our prayers won't stop...Keep up the progress Ava. Even if it's tiny steps.
The Brentlingers
Congrats to little miss ava. you are in our thoughts and prayers.
Angie Hartsell Plude
Happy Birthday Jamie!
Sorry I missed you guys the other day! Continued prayers for Ava's healing and for her parents as well. I love you guys! Stay strong!
Jenny
Jamie,
HaPpY biRtHdAy
May your wishes come true.
LOVE, Carol, Terry, Ryan, Liz,
Travis and Virginia
Ava, our prayers are comming strong. Your test will be ok, I just feel it little Ms. Ava! Just dont fight it too hard. Know that your mom and dad and aunt and uncle are there with you plus Bray, Jamison and Nicholas, so you are in good loving caring hands. So little angel of ours, stay calm. We love you. We love all of you. We pray boy jamie that your birthday wishes come true also!!!!!!!! Bray we love you. Sleep good buddy. All will be ok.
love
granny and poppy
Happy Birthday Boy Jamie! As always, still praying for each of you and those that are caring for Ava. Fever (aka Heather), I hope you got my message. Sending our love to you and Billy too. Please let us know what we may do for ALL of you!
Hugs and Kisses,
The Findeisens
Zimmerman family -
Ava has shown us what she is made of. She is one that does things on her own time, her own way and yet it all seems to be right. She is a fighter with amazing strength and attitude. Even though it may seem like "little steps", they are in the right direction (plus you have to remember that "she is little, so her steps are littler than ours!") We pray for good results with the trial. You have a wonderful family that supports you (along with those following from home). Keep the faith, she is prevailing with the help of the Lord. Prayers sent your way today!
Ginger
We are keeping all of you in our thoughts and prayers. Let us know if you need anything.
We pray lots & lots & think about you alot too. We hope you are doing good. We hope you get better soon so you can come home & see your family & friends.
love Caiden Baxter & family
Jamie & Family,
I just wanted to let you know that I am thinking about you guys today. I hope that Ava's test shows continued steps forward.
Please take care of yourselves. Let me know if there is anything that you may need.
Love & Prayers
Janelle
Just wanted to let you know we are thinking about you.
Angie Plude
(Kathy Hartsell's daughter)
Hoping that the trial showed strong results.
Love, Michelle
just to let you know our hearts and prayers. are with you and your family.
with care and love
mason and his family
Jamie,
You guys are in my thoughts and prayers. We are all still praying for Ava to get better and getting home safley.
Love,
Hannah Rice
Ava, may you enjoy your mom and dad tonight. All 3 of you have so much of my love. I just do not know what to say right now. All I am sure about is you are an angel and you are very special. whatever happens little one, you have made a major impact on all of our lives. Life is not fair so much of the time. We never understand reasons for things. Im especially a skeptical person. But I do know you are loved and will be watched over and taken care of. Please Dear god, always watch over our Ava, nomatter what the future holds. And-take care of jamie and jamie and Bray. Try to make us see reason and give us some answer. Amen
Good night and sweet Dreams Ms. Ava Christine Zimmerman
granny and poppy
Thank you Carol. We all need you so much.
Just checking in to say that I hope that the trial went well for Ava and that each of you can find some peace in knowing that she is in the best hands! Keep faith & stay positive!
Much love & prayers,
The Baxter Family
Dear sweet Ava, you are always in my thoughts and prayers. I have never met you or any of your family but you have been like a light to me over the last few months, reading your blog has given me hope and inspiration. It is something I look forward to everyday, hearing about you, seeing your pictures. Hang tough sweet baby girl. You are strong, I know that you can pull through this. My thoughts and prayers are with you and your family.
May God Bless all of you,
Kristina
Good Sunday morning Zimmerman family. I just wanted to let you know that we have been thinking about you and hoping that today is a good one for Miss Ava. Hang in there.
Brenda
Zimmerman family -
I sincerely hope that the trial results came back on the positive side. We all look forward to the blog updates and pictures that keep all of us at home posted on little Miss Ava. Even with the seemingly endless road you are on, there are so many people at home standing on the sidelines waiting, watching and praying with you. We're coming out of the woodwork, all here to support you and your family no matter what the future may hold. Friends and family near and far, new friends, old friends and strangers who have been captured by your love, devotion, strength and will - we are all here, everyday, right beside you. May God Bless you all and may your hopes, wishes and prayers be reached in the upcoming year. We are here with you and your family. Keep strong.
Ginger
Continuing to pray for all of you! Keep the faith and believe Ava will overcome all of her obstacles. She is a very special little girl!
God Bless!
Korrie
Please Dear God, watch over our little tough cookie. Help her be strong. Help us all be strong. We do have faith. That is why we keep asking for your help. Jamie and Jamie have wanted this little girl more than you can understand. Please let them keep her. Not just in spirit but in their arms to love and hold and care for as they will do. Amen
we love you Ava
granny and poppy
Amen Fran
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