This morning an ECHO was done on Ava's heart. It seems the leaking valve has gotten worse which is preventing Ava's progress. Dr. Hirsch explained that there are no good options. The valve cannot just be repaired. It must be replaced with another bypass surgery. What she really needs is a mechanical valve but she is too small to receive it yet. The other type of valve is too risky right now. She said the risks outweigh the benefits and they would only last a little while without needing surgery again. Our only good chance is for Ava to grow and get stronger (which she hasn't done yet, she continues to lose weight daily.) In three to six months she could undergo the mechanical valve replacement if they can get her to that point. They will redo an ECHO in two weeks to see if the valve has gotten worse or has effected the function of the rest of the heart. They will also check to see if she's gained weight. They will reevaluate at that time. If things aren't going well they will have no choice but to perform the very risky valve replacement which won't last long and will require another surgery soon after. They say the mortality rate for this is high but they are not giving up hope. They have seen patients much worse than Ava survive this.
Jamie and Brayden rushed back here when we got the news. May be unable to get my thoughts together enough to blog daily this week. However, I wanted to update everyone because we need your prayers more than ever right now! If lots of love and prayers can get her through this than she might just have a chance.
Tuesday, November 13, 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)
Blog Archive
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2007
(67)
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November
(21)
- ECHO results
- 8 Pounds Yet?
- "Status Quo"
- Just an Update
- Happy Thanksgiving from Aunt Trace
- U of M Report
- What will the future hold?
- Jamie, this post is for you. Ava WILL get through ...
- Jamie wanted me to blog something, but her last bl...
- Broken Hearted
- Not Quite Ready to Leave ICU
- Not Even A "Whiff"
- Team Meeting
- Finally Some Good News!
- Watching and Waiting
- Quick Update
- 3rd Time is a Charm?
- For Mommy & Daddy
- Rough Times at U of M
- To good to be true
- Out of ICU!
-
▼
November
(21)
21 comments:
"they have seen patients much worse than Ava survive this." And no one can be as strong of a fighter as she is.
You have our prayers Jamie and Jamie. God is with you and yours.
Molly
Jamie, Please know that I am praying urgently and fervently for both you and Ava. I am so sorry! Remember the Doctors always give worst case.
Ava has fought so hard already and she can do this with God’s help!
Love & Prayers,
Janelle
Jamie and Jamie and Brayden,
I pray God will comfort you and continue to heal Ava. I am so sorry, there is not much to say.
But I know prayer works and that so very many people are praying for you. You are never far from our thoughts. Love, Karen K.
The pictures of Ava show her strong will - you can see it in her big, beautiful eyes. She will once again overcome. We will keep you in our thoughts and prayers.
Randy & Emily
We will continue to pray for Ava and your whole family. I pray that she gets big enough and is able to have the mechanical valve replacement, she is such a little fighter. I wish there was something I could do for you, for now we will pray like crazy.
The Meek's
Jamie & Jamie,
I don't know how to put this in words. This is breaking my heart, as well as I know it is for you.You have giving me the little dark haired, blue eyed granddaughter I have always wanted. No one is going to take her away from me, she is just like her Dad, very stubborn!
I know it is going to be very hard, but God will be with us during this time, and look after all of us. So please have faith, I do.
We love you guys so much.
See you sometime Wed.
Jamie, Jamie, and Bray,
My heart goes out to you. I am so sorry for all of the heartache you are experiencing. Ava is a fighter and I am sure that she can sense the love of her family and will fight to make it to be with all of you. Know that we are all praying with all of our might for you.
Love,
Emilee
Your in my thoughts. Love you, Carol
Jamie & Family,
There are many, many of us thinking of you daily even though we do not always comment. Please know you have many friends praying for all of you and wishing we could make everything better. If there is anything any of us can do, please do not hesitate to ask.
Dawn Brooks
jamie and jamie, i'm praying so hard right now. Find your strength from each other and take one day at a time, it seems ava like's it that way.
erin
Jamie, Jamie, and Brayden,
Our thoughts and prayers are with Ava and your family. She is a tough little girl and will fight her way through this.
Love,
The Grishaber's
Jamie & Jamie,
I'm with you in my heart, and am praying for you. As Grandma Behm used to tell me, "My love is winging it's way to you." Give Ava and Brayden a kiss for me. We all love you so very much.
Aunt Stace
Jamie and Jamie,
Ava has proven time and time again how strong she is. You read daily that you are on the hearts of so many people who love you. Please keep believing in the power of prayer and know that God is with you and Little Ava! We love you guys and hope that Ava grows stronger so that the doctors and nurses can get her well.
God's Love and Ours,
The Altergott's
Zimmerman Family,
You are all in our prayers. Keep in mind that the doctors have seen children worse than Ava survive - she will pull through. She has shown us all what a little fighter she is. She likes to do things her way - just because she takes her time, doesn't mean it isn't right or it isn't working. Please try to be strong and remember we are all praying for you and your family daily.
Ginger Andres
Jamie,
I'm so sorry to hear the latest news about Ava. Your beautiful baby girl has already shown how strong she is -- just like her mom and dad. I know you're going through the most difficult time of your life, but please know that Ava, you, and your family are constantly on the minds of so many others and you are all so loved and cared about. If there is anything I can do, I'm only a phone call away.
Continuing to pray,
Amy Rudlaff
jamie,jamie,Bray
Bray i saw you out trick or treatin
you looked so cute in your outfit.
Dave and I and boys, are always thinking about your family,are thoughts are with you daily keep the faith she is a fighter. She has Justins and Mo Mos hair. cant wait to meet her. Love Darla
Ava, none of us will ever let you go. Please make the doctors wrong. And Ava, our prayers are stronger than ever. I am with your crazy hair grandma, we all need you for so many reasons. All of us are blessed because of you. You have to fight this. Please Dear God, help Ava, Bray, Jamie and jamie be strong and pull through all of this awful turmoil. Right now life is very unfair. Im choking up Ms. Ava. I will write later. Girl Jamie, please keep the strength that you inherited from your dad.
love all of you
granny and poppy
Jamie & Jamie-
We have been praying for Ava every day and will continue to until she is completely healed. She is beautiful! She has two very strong parents and big brother, and loving family to help her through this! She has shown already what a strong little girl she is! If there is anything you need please let us know!! I will send dinner or anything else you need.
You are in our prayers everynight!
Korrie Krueger
Jamie and Jamie,
I am so sorry for what you are going through, and, of course, for little Ava. She sure is a fighter, I'm praying for you all! Just remember doctors do not always have all the answers-depend on God, He can change things around for you.
Kim Karnes(Runyon)
This is the first I have read your blogs since Thurs., I had no idea this was all going on! This is so frustrating! Way too much up and down for you guys and it just doesn't seem fair. I truely believe Ava WILL pull through all of this but geez. She has allready proved what a fighter she is. I'm not sure anything could stop your little beauty.I want you to know there are two things I am praying for harder than I can say and Ava is one of those two. Stay as strong as you can, I am thinking of the whole family.
Lisa
Jamie,
I am sorry that you are going through this. I felt terrible for you when I read about yet another set back. It is completely unfair, but Ava is a miracle in so many ways. She means so much to so many. In a few short weeks your precious girl has brought together and strengthened a community, she has reminded all of us to slow down and take time to enjoy one another, to appreciate every moment and not take any thing for granted and most of all Ava has retaught everyone just what is important. For that we will never be able to thank her or you enough. Kep taking care of each other. All of you will get through this.
-tori
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