So Ava's xray of her abdomen was much improved today. Her blood work looks fine (no increase in white blood cells indicating infection) and the one stool she had tested negative for blood. We hope we're on the right track and will continue to watch her closely. Still hoping for the now much needed valve replacement surgery on Wednesday, December 19th. Her heart function is apparently now starting to effect the other parts of her body. The plan is to keep her off of feeds and on antibiotics until surgery. She has been quite the trooper and not too grumpy about her empty belly. She had another PICC IV line put in today in the cath lab because her other one failed on Monday. She was sedated for this procedure which probably helped her sleep more and crave food less today. The poor baby has so many bruises, scars, etc. from all of this. It's been a rough couple of days for her because she's been poked and prodded so often.
Hoping and praying that we continue down this path of healing for Ava's GI area. If things continue to improve she'll have her second open heart surgery next week. It's hard to imagine going through all of this again.
So many people to thank (I have a list to keep track)! I am so exhausted, however and need to get to sleep because it's late. So thanks to everyone that has helped our family in any way. Thanks, especially, for your continued prayers!
Friday, December 14, 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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5 comments:
Morning Jamie,
I hope you were able to get some sleep last night. It sounds like Ava is being so strong and getting ready for her surgery. I am amazed about the "no feeding" rule and I think about her throughout the day when I feel like "I" am sooo hungry. She is a fighter for sure! I have to mention that the support you are receiving from family and friends is phenomenol, it reflects on the type of family that you are and you should be very proud of that! Anyway, as always we will be thinking about all of you and praying that she will be able to get her surgery on Wednesday and come home soon! Much love & prayers, Carey, Lori, Ally, Caiden, Adison & Kendall Baxter
The road ahead seems so long, but you have miles, miles, miles, and miles behind you. I'm glad to hear she is doing better! Her strength continues to amaze me!
Take care - lots of love and prayers!
Emily
Jamie -
Just as your little fighter is pushing on, you must do the same also. Let our prayers help you through these tough times. She is an amazing little girl who has taught a lot of people about strength, will and love. Keep fighting the fight with Ava, Jamie and Bray, as we all are too. We hope you have a wonderful weekend, get some rest and remember that everyone is right there with you. Daily thoughts and prayers are with you all.
Ginger
"A Baby is a Miracle"
This little tiny baby
Was sent from God above
To fill your hearts with happiness
And touch your lives with love
He must have known
You'd give your all
And always do your best
To give your precious baby love
And be grateful and so blessed
Love You,
Aunt Stace
Oh my goodness, Ms. Ava- your Aunt Stacey said a wonderful poem. Mostly for your mom, but it was beautiful and perfect. Ava, you and your mom are worn out. Please-both of you rest. This is a time for you that as a granny, I am involved, but yet I cannot fathom. Ava-your mom loves you so much. I worry about her as much as you. Yes, you are the sick little pretty thing, but your mom tries to be tough. Just like your poppy ava! he hides all his emotions and feelings. Says everything is fine, yet we all know better. Your mom is just like that. They both take after your great Gram!!!! She is a fighter and has gone through alot. So-Im hoping if you take and look after them so much you will come through all of this fine and home in time. Just look after your mom little one. There is nothing like a Mothers love. Believe me I know. Sleep tight. Will check in tomorrow. When your mom has a chance, tell her we need your wrist size. Its a special gift for you Ms. Ava! Jamie-Take care and know Bray can be here or I can be there for you. All will work out. What is important right now is your family. That comes first. All else will work out fine. But you, B. Jamie and Bray and Ava, are all that you should be thinking or worrying about. Nothing else. No thank yous. We are friends and family. We all love you. No one wants a thank you. All we want is you home safe and sound with your family and let each of us hold Ava and kiss Bray!!!!!!!
Good night sleep tight
Love and prayers
granny and poppy
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