As many of you already know, Ava's chest was closed today. They thought this might have to be done over the coarse of several days because her breast bone was so far apart (as it was cut open to access her heart during surgery.) She tolerated the procedure well and they were able to completely close her chest. Things were looking great and we were cautiously celebrating this "hurdle" when her heart rate dropped a bit so they did an ECHO of her heart. All looked well from surgery but the left side of her heart looked significantly smaller than the right. Not anything they are majorly worried about at this point but at some point she may need a ballooning or stent put into one of her left arteries. They wouldn't want to do it now because her body (especially her kidneys) are still recovering from all the trauma and fluid build up after surgery. All of this we handled pretty well.
Then we got the news that her DNA test results finally came back and she tested positive for Digeorge Syndrome. At this point we only know that she will need extra calcium, and that she will probably have immune deficiency problems which will make her more susceptible to illness. The doctor also said that these babies usually have developmental delays (ranging from very minor to severe mental retardation). Apparently there is no tests that can be done to determine how severe this syndrome is in Ava. We will just have to wait and see when she starts to hit these developmental milestones. We will know more after we speak to a genetic counselor and they give us more information. We are trying so hard to be positive and strong but are not sure how much more we can endure.
Brayden left today with Grandma and Papa Zimmerman. He will stay a few nights with Aunt Heather and Uncle Billy and then come back for the weekend. He has been amazing through all of this. He adores "his baby" Ava and even cried the first night we had to leave her overnight at the hospital. It has to be extremely difficult for him as well. Please keep Bray in your prayers too, everyone. And thank you God for watching over him on the way home from U of M today when another vehicle ran into Wilma's car. Everyone was fine but Brayden now calls Grandma a "crazy driver".
Thank you so much for all of your thoughts and prayers. We need all the support that we can get. It is guaranteed to be a long, rough road for our entire family. Thanks to Molly and Tracy for getting us started on blogging. One of us will try to update it each night.
Tuesday, October 9, 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)
12 comments:
Jamie and Jamie,
thanks for updating Ava's condition, and Bray is right, Grandma is a 'crazy driver"! I guess it goes along her crazy hair. HaHa
I am going to look into more info on the newly diagnosed syndrome and post some info. But more importantly: remember, God doesn't give us anything we cannot handle! He is watching over her and I firmly believe in my heart that she is going to make it to live a long special life. We are all here to do what ever needs to be done and the prayers will never stop or even slow down.
Please give her a kiss from her Aunt Trace and tell her I love her and will be up to see her asap.
I love you Jamie, Jamie and Bray!
Stay strong!
Zimmerman's'
Your family is in our prayer's. Ava Christine is so pretty, congratulations! May she get stronger each day. I pray the next weeks are filled with good news and healing, you soo deserve that. The whole Niles community is praying for you.
Take care,
The Meek's
Troy, April, Brendon, Kylie, and Ava Grace
Dear Zimmerman family,
Thank you for sharing...this blog is great as I you have been in my thoughts and prayers daily!!!! Ava is a beautiful and strong little angel!!! This certainly must seem more like a canyon than a valley...but hang in there we are all praying for you!
Lots of love,Peg
Jamie and Jamie-
Roller coaster, indeed!! As your sister-in-law stated, God doesn't give you something that you can't handle and at this point I am sure you are feeling like enough is enough.
No matter how big or small any of Ava's hurdles are or will be I can't think of two more loving parents for her.
Love, Michelle
Dear Jamie & Jamie,
Congratulations...Ava Christine is just beautiful! Heather called to let me know about Ava's Web site...it is so nice to be able to find out how she's doing.
I asked to speak to Brayden, and we chatted for a minute...he said he was having fun playing. I said, "So, you have a new baby sister, honey?" He said, "Yes, her name is Ava." I told him I bet he was a very good big brother, and he said, "I AM!"
We think about you every day, and you're always in our prayers. Uncle Bob said to tell you congratulations, and he's thinking of everyone, too.
Can't wait to see that little sweetheart!
A big hug to Brayden!
Love you!
Aunt Stace
P.S. If there's anything at all I can do, maybe for Zeke and Abby, please let me know.
May today be an uphill climb on your roller coaster ride. Know friends and family are pulling for you all (especially during those downhill days). Love and healing from the whole Timm family- Linda and Boyd, Chrissy and Mike, Shaune and A.J.
Ava is in our hearts and prayers. Tell Brayden that his friends at school are missing him and hope he will be back soon.
Jame & Jame,
Little Ava is absolutely beautiful! We are all thinking of you and praying for her recovery. She looks like a strong little girl and I am sure she is putting up quite the fight. She was named after her strong willed Aunt so she must have some of her strength running through her veins.
Tracy - you have done a great job with the website and it helps so much to be able to know what's going on without having to bother anyone with a phone call.
To all the Zimmermans and Weavers -we love you all and are keeping you in our thoughts daily.
Be Strong!
Love,
Theresa & Duffy
You've been blessed with an angel, Ava is beautiful:-)!!! She feels all the love your giving her, and the love and prayers being sent her way and it's making her strong. She will get through this and all she will remember is the LOVE she feels from her family and friends. Hang in there!! The pain and obstacles you have to endure now, will be replaced with Ava's first smile, laugh, the first time you push her in a swing and sooo many other good memories that are yet to come. There are more of us than you know praying for Ava and her fast and complete recovery. Our thoughts, love and prayers are with all of you and also know that
I'm thinkin''boutcha!! xox
Jamie and Jamie,
You are two strong people who are AMAZING. I admire all that you have endured and feel you will endure all that may come your way, I promise.
When you are ready, I do have some support group info that others have sent me and some websites of parents of DiGeorge children. There are soo many great things out there happening and these kids are happy, healthy kids. You will get there! But for now, take one day at a time and enjoy all the progress, no matter how tiny, that Ava fights to make.
I hope you continue to hold and love one another. It will make you even stronger. Heath will take care of Brayden and before you know it, his cute little self will be back asking about his baby!
Blessings to all of you--
Molly
Dear Jamie,Jamie,Brayden and Ava,
Not a day has gone by that we haven't had you all in our thoughts and prayers...sure hope you can sense all the "good vibes" being sent your way! Ava is just as beautiful as I imagined she'd be, and I know you and she are in great, capable hands at this stage in her life. Audrey's bedtime prayer continues to be that "baby Ava's heart beats loud and clear"...we second that! She's also looking forward to having her buddy Brayden back at school with her; let me know when and if you'd like the carpooling to start again! With love and admiration of your strength, Gretchen, Dan and Audrey
Girl Jamie,
I'm so glad I was able to "talk" to you through Heather! Your adorable son told me He is the best big brother and he loves "his Ava"! He and Jameson looked so cute in their matching raincoats tonight!(The ones from the baseball tournament!) Thought you could use a little sunshine from home. Miss you and I'm sending you my strength to Ava! Can't wait to go shopping again so that we can get Ava more pink outfits!
Love you all,
Juli
Dear Jamie, Jamie and Brayden,
I now have access to the internet at work. What a wonderful site. Some of the photo's are so overwhelming. Ava is beautiful and strong. You guys are always in our prayers. It's amazing to see the power of prayer!! You guys take care of yourselves. We love you.
Grandpa Dan
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