This is an inspirational quote that can be seen on the window of the PTCU unit where Ava is. Today was a pretty good day for Ava, we walked into her room this morning and they had removed her 2 chest drainage tubes and took out her dialysis tube. They have been weaning her blood pressure medications (she is now down to 2 instead of 3) and some of her breathing support so that her lungs can function more on their own. We never thought that seeing our sweet little girl on only 12 medications would be a day of victory. They are still concerned about her left pulmonary artery which they believe could be smaller than the right. This will lead to an MRI on Friday at 11:00 to determine what steps to take next. This could mean a simple catheter procedure to open the narrowed artery. It also could mean another bypass surgery for Ava. This would put her back to square one. Please pray for good MRI results on Friday. If she needs one of these procedures the doctors think it would take place early next week.
Happy birthday to Jamison Lee on Thursday the 11th. We miss him and love him dearly. Hugs and Kisses to Brayden Lee as he's tucked in tonight. We sure miss him but we know he's in good hands with Aunt Heather and Uncle Bill.
Thank you so much to our family for everything they have done so far. We are sure there's more to come that we will need each and everyone of them for. We are especially grateful to Heather and Billy for caring for Brayden just like he's one of their own. Once again thank you all for your prayers and support as our baby Ava fights for her life!!
Wednesday, October 10, 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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October
(28)
- Turning a corner?
- Holding Tight!
- Extubated Again!
- Happy Birthday Ava!
- Quick Update
- sick day at Ronald McDonald's
- Life's Rainbows
- One Step Forward, Two Steps Back
- U-Turn on I94
- Last post from me
- Even More to Overcome!
- The End of C-PAP - Coming Soon???
- Cherishing Every Moment!
- In Her Own Good Time!
- Short and Sweet
- Another message from me
- Ava's on Viagra! What?
- A lot to be thankful for
- Ava's update
- Brayden's note to Ava
- MRI Results
- A different note
- Another Day of Progress for Ava!
- Courage is not always big and loud, sometimes it's...
- More to the roller coaster ride!
- Big Brother Brayden
- UPDATE.....Ava is slowly getting better!
- Trying to keep this up to date
-
▼
October
(28)
11 comments:
Jamie and Jamie,
I am so glad that you have your family. They are wonderful.
We will certainly pray for you even harder on Friday, if that's possible. Thinking of you always.
Love,
Emilee
Happy birthday, Jamison!
Jamie and Jamie-
I got to see Brayden for the first time today since being a big brother. He was in Aunt Heather's car all set for school with his book bag in his lap.
I look forward to Jamison's birthday treat later this morning. He looked pretty proud to be the line leader today.
You are so blessed to have such a wonderful family.
You are always in my thoughts and prayers-
Love, Michelle
Jamie(x2),
Prayers, prayers, and more prayers. That's what we're doing at The Altergott House. Hope to hear positive news on Friday.
Love,
Beth Altergott
I sure miss my visits with Jamison in the morning. Tell him happy birthday for me
Jame and Jamie, ever since monday when this beautiful blog was set up i've been going over and over in my head trying to think of just the right thing to say....which nove i realize there's no such thing. But i do know that both of you are strong amazing people and that eva's one lucky little girl to be given the two of you as parents. Because that's what it is jame, eva wasn't given to you, you and jamie were given to her. It takes special people to take care of a child w/ special needs!!! And we all know she's in the right hand's with the Weaver's and Zimmerman's. Plus let's not forget..with and aunt like heather she's sure to be a little firecracker. My prayers are with you every minute!!
peace & love
erin
Jamie & Jamie -
Ava is in great hands. We know she has wonderful parents and a very special big brother. We're thrilled when we hear of her many improvements, she is one strong little girl!
Randy and I will continue to think of Ava and you often - especially tomorrow at 11.
With Love,
Randy & Emily
Jamie and Jamie and Brayden,
Words are so hard right now, I know there's nothing we could say to make you feel better but please know that we love you all and there's not a minute that goes by that you are not in our thoughts. We're praying strongly. Love, Chrissy and Mike
It was WONDERFUL having Brayden back in school today. He is strong and will get through this with the love of his family. Ava is SO lucky to have such a special big bro. Love to you all !!!!
Hi Jamie and Jamie,
Ava is beautiful!
I want you to know that you are all in my thoughts and prayers. I love you very much and if you need anything, please call. I don't live that far away from the U of M hospital and would be happy to bring you anything or help in any way that I can. I will pray extra hard for good results on Friday and will be so happy when you get to bring your baby girl home. Thank you for putting this site together for all of us to visit. You are both very special friends and I know that Ava is very lucky to have you as parents.
Love, Jenny
Hey Guys,
Just wanted to let you know that I'm praying for you all everyday. Ava is so cute and obviously a fighter (which comes as no surprise to anyone that knows the Weaver girls!)and I believe with all my heart that she's going to heal quickly and be in her cozy nursery sooner than expected. The two of you have been inspirations to all of us for the past 15+ years, the love and dedication you have for each other and your beatiful children is infinite and obvious and God certainly put you all together for a reason. Hold tight and know that concern and love for you is widespread. Miss you and can't wait to meet your miracle baby...
XOXO
Robyn
Jamie and Jamie,
We wanted to let you know that we are praying for your entire beautiful family. We know that there are no words we can say to ease your hearts. Try to find comfort in all the prayers and happy thoughts that are being said for your family.
Jamie, you are missed greatly at school. In such a short time you have touched the hearts of so many children. Please know if there is anything we can do- we will gladly be there!
All our prayers,
Hunter Horton and Paula Rose
Dear sweet baby Ava Christine,
You are just as beautiful as I had imagined. You don't know me, but I have held you close to my heart from a distance, and you and your family have been in my constant prayers.
How blessed we are that we have a God who can mend, heal, and restore even the most broken of hearts. For He created us, and He knows our hearts better than anyone, He knows just what we need.
I love you and your family very much, and I know that when we cry, our Lord cries right along with us.
You have so many people who don't even know you or your parents praying for you.
Be strong, Ava.
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