Ava has had a good weekend. We started bottle feeds again today and she ate like a champ and tolerated it well. This is one area (knock on wood) that we have not had issues with. Ava has also been completely off of oxygen for the entire day. Can you believe it? For the last three days she has been on only a "whiff" or one-sixteenth of a liter. Each time they tried to take her off, though, her oxygen levels dropped. It is so nice to see her little face without those tubes in her nose. They also removed her central IV line. They discontinued her antibiotics too. The last few days she has had higher blood pressure which is not typical for her. Usually her pressure is a bit on the low side. They do not seem too concerned and Dr. Hirsch says if they need to they can give her something to reduce it. We will probably be sent to Moderate Care tomorrow. I keep telling myself that this time will be different. Now that they know her history I pray they will be a bit more cautious. I have also learned that I must trust my instincts and speak up more often.
We were blessed over the weekend to have great nurses taking care of Ava! She had both of her associate nurses. Amy took care of her during the days and Jessie had her at night. You have no idea how comforting it is to have people on who know Ava well. We completely trust them with her care. Hoping all went well for Jenna (Cheryl's daughter) at her cheerleading competition this weekend.
I am feeling blessed for the calm weekend so that I could spend some quality time with Brayden. I felt terrible last weekend because we looked so forward to seeing each other and then all hell broke loose in Moderate Care. This has to be so hard for Bray. He wanted to stay here with me today when it was time for them to head home. I wish I could have kept him but knew I couldn't do it by myself. Always looking forward to the next weekend when we can all be together again. Take care of my boy, Jamie Lee!
Thank you Linda Timm for the multiple copies of books so that Bray and I can read a bedtime story together. I think it means more to me than it does to him. Thanks Aunt Stace for the gifts. Brayden loved the dinosaurs. Thank you too for taking the kids to McDonalds this week. Jamison, thanks for protecting Brayden when the little boy was picking on you guys at McDonalds. You're a great big cousin! I appreciate you cooking meals for the boys this week, Kelley Best.
Praying that Ava makes progress and has no setbacks this week. Asking God for strength to deal with anything that comes my way this week. Goodnight all!
Sunday, November 11, 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
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November
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- ECHO results
- 8 Pounds Yet?
- "Status Quo"
- Just an Update
- Happy Thanksgiving from Aunt Trace
- U of M Report
- What will the future hold?
- Jamie, this post is for you. Ava WILL get through ...
- Jamie wanted me to blog something, but her last bl...
- Broken Hearted
- Not Quite Ready to Leave ICU
- Not Even A "Whiff"
- Team Meeting
- Finally Some Good News!
- Watching and Waiting
- Quick Update
- 3rd Time is a Charm?
- For Mommy & Daddy
- Rough Times at U of M
- To good to be true
- Out of ICU!
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November
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6 comments:
Jamie,
Thanks for the great update! I am so happy that Ava is doing so well. Before you know it, you will be home with Brayden and he won't have to miss you any more. I will be praying for Ava all day in moderate care.
Love,
Emilee
Jamie -
Such great news to start the week! It is clear that Ava is in great hands with her doctors and nurses, and even better hands with you. Jamie you are such a great mom, reading your updates today gave me goosebumps! I'll continue to say lots of prayers.
Emily
Jamie,
It's so good to hear you talk about coming home soon. I can't even begin to imagine what it has been like being up there all this time and away from your family. You are such a strong person and I admire you for that. Great news on Ava's progress. Look forward to hearing more. I will be praying for Ava today as she goes back to moderate care. Take care of yourself and I hope to see you soon.
Love,
Sara
Jamie -
What wonderful news! Don't worry about coming home. The doctors are right - that is where she needs to be! I know it can be intimidating with thinking of everything that you have to learn to bring her home (we've been through that too), but once they show you, it will all go like clockwork. Don't ever hesitate to ask if you need something - you have a wonderful support staff waiting to help when/if needed. Congratulations and happy moving to Moderate Care! Ginger
Okay Miss Sassy Pants, when you go into moderate care, stay there! No going back to PICU!
Can't wait to see you again and mostly get you home. Kisses and hugs Ava!
Love U, Aunt Trace
Good morning Ms. Ava! I am so proud of you. What a fighter you are. I just know all will go well this time. Jamie you are a good mom. Never doubt it. You are doing all that is humanly possible for anyone. maybe even more so. Believe me, all of us are saying alot of prayers. If I cant come this week, which hasnt been determined, I will be seeing you there on turkey day. And hopefully we can have a real celebration. You will have your whole family coming to be you and your daughter!!!!! I too get goosebumps reading your words. I think I speak for all of us, when you get home with our Ava, you may have to keep writing!!!!!!! We love you Ava-keep strong baby!!!!!!!
granny and poppy
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