Ava did fine off the ventilator today. All three of her blood gases looked good. She was a bit cranky this evening because she wants to eat. They may begin tube feeding her tomorrow. They are also hoping to have ENT look at her vocal chords tomorrow. I'm told that if one of her chords is paralyzed they won't do anything to repair it for 4 to 6 weeks. This would mean no bottles - only tube feeding for that long. Everything seems like such a long road these days. I see so many babies come and go from the PTCU unit in a matter of days. I can't help but be sad that it isn't us. We've now been there for 38 days and counting.
Thank you Heather for taking care of my boys by feeding them and doing their laundry. You're the best! (You even know how to ice it baby!) Thank you, Jenny for feeding and supporting me tonight. I really needed it.
Pray for all the little babies here at Mott that are fighting. Ava, Ke'Myiah, Jack, Ryer, and Claire just to name a few! It's such a shame that they have to go through all of this suffering at such a young age.
Tuesday, November 6, 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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8 comments:
Way to go Litle Ava!! Just keep up the good work. Me and Papa will be there soon to see you again. Remember Papa? He is the one that wouldn't shut up talking to you so you could look at me last Fri. It must be the beard! Also G-Jamie, remember what I told you about taking care of yourself!! I mean it too!!!Tracy said I was acting like I was your mother, well in a way I am, so take care.We love you and Heather like you are ours.
See ta soon,
Wilma
P.s.
I should use spell check too!!!
Thanks for the update, Jamie. Stay strong. We are thinking of you always and praying that today will be a good one.
Love,
Emilee
Good girl Ava!!!!!!! We all love you so much. Im with Wilma Jamie. Please take care of yourself. Ava will be out when shes ready. Hold on to that thought. I have to go for now. Im late for some tests myself.
Love you all
granny and poppy
Jamie,
Brayden and I will be up there soon. we both miss you very much. It's hard to wake up in the morning with out you by my side. At least I have buddy there. Remind me when I get there to not take Brayden to Wal-Mart again, he's a terror and wants everything. The only thing that kept me sane with him in there was he wanted to buy everything for Ava. It's funny because I didn't know she liked airplanes. Either way we, we love you and will see you soon. Give Ava kisses from us and tell her to stop giving the Dr.s such a hard time.
Jamie,
I have been following from the start, but just figured out how to post a comment (Sorry! LOL)My thoughts and prayers are with you and your family. Your family has so many people praying for you, pulling for you and supporting you, remember to draw on their strength so that Ava can draw on yours. She is a wonderful little miracle and will pull through this with flying colors - she has no other option, there are too many people that can't wait to see her! May God bless you all and we hope to see you all home soon!
Ginger (Kazmierski) Andres and family and Tom and Paula Kazmierski
Jamie,
Ever since Stace told me about Ava's site I have been checking daily for updates. My heart goes out to you and your family Jamie. I can't imagine what your going through. You are in my thoughts daily and I along with everyone else pray that your sweet little baby girl gets well soon.
Love,
Sarah(Evans)Gowen
Hi Jamie- I am a friend of Jenny's and she gave me this link to read about Ava. my daughter was born at UofM on Sept 6. she has a similar heart defect however not quite as severe and I was able to bring her home for a while her surgery is going to be on December 3. It really makes me feel conected to you because I to have a son who is a little younger then yours but when we were is the hospital in the beginging for two weeks I felt so guilty for not being able to spend time with him. as you know it is not easy to bring a two year old. I hope and pray you are long gone before we get there on dec 3. I will pray for you everyday. If you need anything at all please let me know. Jenny can give you my email and cell number. I will be at UofM on the 13th and the 30th. if you need anything do not hesitat to call.
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