Ava's doing fine. She's been a bit fussy lately because of gas and not eating.
It's been a long day. Jamie and Bray left early because of the snow. I miss seeing my son each day. I miss him so much. It's hard to believe we've been here 11 weeks, 78 days, and three seasons (it was 90 degrees when we arrived and now it's a blizzard outside). Still such a tough road ahead of us, too. I know this will be a tough week for me. Not even three months old and having two open heart surgeries. It's amazing.
Please, Lord, give Ava and Jamie and I strength to get through this! Please continue praying for my sweet Ava, everyone. We need your prayers now more than ever.
Fran, Ava's wrist is 4 inches. Measured it two days ago but forgot to call, sorry.
Sunday, December 16, 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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7 comments:
Jamie,
I am praying that Ava's surgery leads you to a path home by the new year. I am so sorry that you and your family have had to endure so much.
I know this week will be a busy one. I am going to try and get some dinner to your husband. I will keep you in my thoughts and prayers all week.
Love,
Janelle
Jamie and Jamie,
You are the inspiration and the strength that Ava needs to get through this. She is blessed to have parents like you. All of us "back home" keep you and your family in our prayers daily and will continue. Please know you are constantly thought of and in our prayers....May God Bless all of you.
The Brentlingers
Morning Jamie,
Sorry to hear you are a bit down today :( Just remember that this is just a chapter, a new one will begin soon and the four of you will be together! Stay positive, stay strong and we will all continue praying for each of you!
Much Love & Prayers,
The Baxter's
Zimmerman's
As always, family and friends are here for you and praying for you all daily. The Lord has blessed you with an extremely tough little girl. He only gives what he knows you can handle. As hard as it is to believe and wonder "why", there is a purpose. Ava is such a little fighter, a real trooper and inspiration, as you are too! As Lori said, this is just one chapter, a new one will be beginning soon, with you all at home together. Daily prayers and thoughts continue. Keep strong and rested and keep believing!
Ginger
Jamie,
You amaze me! God has surely given Ava to the right parents. This will be a hard week but try to focus on the light at the end of this long tunnel. Soon, very soon, you will be bringing your baby girl home so you can finally be together as a family should be. You have so many people praying for you all.
Love,
Beth A.
Oh our little Ava. You will always have our prayers and love. If I could have one wish granted to me right now-the wish would be for you to come home and be healthy. For your mom and dad and Bray to hug and love on you in their own beautiful home. You are a lucky little girl. For you do have fantastic parents. They are handling all of this far better than I feel most of us could. Jamie-you do not owe me an apology for goodness sakes. You are doing what you have to be doing. Being with your daughter and loving her and watching over her. But I am excited to get this gift to you! But you know what a kid I am!Well little Ava take care of yourself and your mom. Both of you rest. You both need all the strength you can muster.
We love you
granny and poppy
Jamie I will come there tomorrow if you need me to?
Jamie--If I were gassy and not eating, I would definitely be fussy too! : ) What a typical baby--but only ALL of us know Ava's strength and how extraordinary she is! I bet when you get her home and things are finally settled she will be the most content baby on earth...no more needles, pokings, proddings, all the food a girl could want...it is so much closer than you think Jamie...it WILL get here.
My mom's path report should be coming back Thursday too--here's to a manageable report and a super duper easy peesy chicken weezy recovery for our Miss Ava. Prayers are consistently being said. Its all in good hands.
Thinking of you often--
Molly
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