Something came over me this morning and for some reason I really wanted to post on the blog. I guess my therapist would say that is progress. Brayden and I are at home for our second snow day. He woke me this morning by playing a musical angel snow globe that he got for Christmas from Fran and my dad. It is engraved and tells him that Ava is watching down on her big brother from heaven. We spent some time talking about her and what she would have been like if she were a fifteen month old here with us. We laughed about how crazy her hair would have been and about how she would have been walking and getting into everything! What a great way to wake up - with Brayden crawling in bed with me and a reminder that Ava's spirit surrounds us.
People often ask how we are doing. What can I say? My typical response is "I'm okay" because I don't think many really want to hear the honest answer to that question. It has been a year since we lost Ava and not a minute goes by that she is not on my mind. We all miss her so much. The roughest time for me since she died was September through the first of January. That small window of time that she was here with us last year. It helps to go to my support groups and to do things in honor/memory of Ava. Right after she died we decided to do something once a month in her memory. I will try to post some pictures of a few things we've done. Jamie misses his baby girl an awful lot but deals with it much differently than I do. He chooses to stay busy and doesn't talk about his grief (go figure). Sometimes I worry about him bottling it all up. Brayden remembers Ava with the sweetness of a five year old. He finds signs of her everywhere! Angels, rainbows, stars, dandelions, pacifiers, pennies, etc. He talks of her often. I hope he will always be able to remember his baby sister.
So for now we get up each morning and try to face each day even though our hearts are heavy. Our lives are forever changed, we will never be the same people we were before we lost our sweet baby. The harsh reality that something terrible can happen at any time is all too clear to us now. But, we try to remember how blessed we are for so many things. If you continue to view this blog than you are among the people that we are blessed to have in our lives. It is so important for us to know that Ava touched other peoples' lives and that she is still thought of and remembered. We are thankful to have so many supportive, compassionate people around us. Thanks for lending an ear.
Friday, January 16, 2009
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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)
23 comments:
Thank you so much for sharing your heart with us. We can not tell you how much your family means to me, matt and the girls. It is so funny when ever I think I need a little help I somehow find a penny, in the same moment I am praying. Bellzie will find them and bring them to me as well. Ava is forever in our hearts, prayers, and minds. Thank you again for everything. My "Believe" metal is in my car to help me focus before I take Olivia to therapy, such a great piece. Have a wonderful weekend and stay warm.
love
Ang
Thank you for sharing your feelings, and details of your daily life in your blog. Ava was such a beautiful baby, and her story touched me deeply. I would love to see more pictures of her! :-) If you have a minute, maybe you could post some more on the blog?...
A big hug from Oklahoma,
sonia lopez (Emma Routh's mom- in heaven with Ava since July 2008. Went up to Heaven also at 3 months of age).
Jamie,
Your words bring tears to my eyes, and I was so glad to read them!!! I appreciate your honesty, courage and strength.
I can honestly say not a day goes by that I don't think of you, your family and Ava. I'm thrilled you find so many signs of her spirit around you. I have no doubt that this will continue forever.
I am forever changed by lessons Ava taught me.
Lots of love and continued prayers,
Emily W.
Tears here! Thank you for sharing.
Holly
Oh Jamie-we will never forget your sweet Ava. I check her blog often, so nice to hear your thoughts. Ava has changed my life forever. I don't take the small stuff for granted and I know exactly how blessed I am. Ava's spirit and toughness helped me through a very difficult time when Troy was battling cancer. Thank you for sharing your girl with us.
Take care,
April
just a note to let you know i'm thinking of you.
emily w.
Just wanted to say good morning, hope you guys have a great weekend!
love
Ang
Hey Jaime just wanted to let you know I am praying for you (as always) today. I just read on MOlly's blog about Grams. Please know you guys are in my prayers.
love
ang
Jamie,
It was so neat to see how Brayden is with Ava's memory that day we came over and to see how he wrapped everyone's 'gift' from he and Ava. Her memory is so alive and is amazing how she still touches lives.
I'm so sorry to hear about your grandma, but find comfort in the thought that she is up in Heaven with Ava, watching over her.
We are continually thinking about you and your family. Call us any time.
Love, Mark and Sara
thinking of you, hope all is well.......
Just wanted to check in and say hi. We hope all is well.
love
ang
Hope you guys have a wonderful spring break!
love
ang
Happy First day of Spring Break!
love
ang
oh my goodness, my mom just told me you were in town and I did not know it. I am so sorry. Our e-mail address changed ~ m_aplude@msn.com
I miss you sweet baby girl!!!!
So does your mommy and big brother!!
Daddy
Never far from my thoughts, hope all is well......xox
Ava -
You continue to touch me daily.
Emily W.
I still think of Ava so often. I am so sorry that she never got to experience life with her family. She was really cheated. You are such kind and loving people and I feel so fortunate to know the three of you.
Love,
Emilee
Hope you are having a great end to the school year!
Ang
Watch over Papa as he goes through his Triple Bypass today sweet baby girl. I miss you!! Daddy
Thought I would check in. Sorry to hear about your Dad, Jamie. Hope Surgery went well and he is on the way to a quick recovery!! I'll keep you in my thoughts and prayers....
always thinking of you and ava
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