Things are extremely difficult for me right now. Too many unknowns in the future. Anyone who knows me well knows that when I am upset I withdraw. Each day has been an emotional struggle for me and that's why I haven't been able to blog.
But here's an update for Ava's devoted fans. Things are going okay for Ava. We are trying to take things one day at a time. Ava is stable and has been in Moderate Care since Wednesday. She's back on a "whiff" of oxygen (one eighth of a liter). Ava started smiling at us this week. She is also starting to have a bit of sound when she cries. She has gained a bit of weight and is now at her birth weight of 7 lbs 8 oz. In a week and a half they will look at her growth and do another ECHO of her heart. They will reevaluate what to do about her leaky valve at that time. Will we wait longer or will she need surgery soon? Only time will tell I guess.
Please continue to keep us in your thoughts and prayers.
Monday, November 19, 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
(67)
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November
(21)
- 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
(21)
18 comments:
Jamie,
Thanks so much for the update. How wonderful that you were able to see her sweet little smile and hear her. It also seems very positive that she has gained some weight!
I think of you and pray for you always. Hang in there!
Love,
Emilee
Zimmermans -
I am so glad that Ava is gaining weight! It is also wonderful that she has been in MC for this long! Judging from her most recent pictures - I bet that smile is a real knockout. As always, you are all in our thoughts and prayers. Keep the faith!
Ginger Andres
What a beautiful baby girl!!!! My thoughts and prayers are with you all!!! Hang in there, you having many thinking of you and praying for you all.
Colleen
(wings etc.)
Hey Jamie,
I just talked to Michelle and she said Ava is gorgeous and has perfect "lipstick lips". I'm glad to hear she is gaining some weight and hope that soon all of the things that are unknown can be answered. Please remember that your Howard/Ellis family loves you and want to help in any way we can!
Love,
Beth A.
P.S. Tell Ava to keep smiling (her mommy and daddy too!)
Jamie, Jamie & Brayden,
What a beautiful Little girl Ava is; We're sure her smile radiates the room.
You are in our Prayers daily. If "Love" alone could pull Ava through, she would already be home.
Keep your Faith, know there are many people pulling for Ava.
Our hearts break for you...but we believe Ava can come through this.
Love,
Karol & Phil Mazzotta
Good morning sweet Ava. Oh my, Im crying right now of happiness to know you are gaining weight. Keep gaining little one. That is a very positive sign. And I bet your mom is so happy to hear your little noises. We must thank God for any miracle we can get at this point. Having you home will be the best miracle of all. Jamie-I too withdraw when I cannot handle situations well or am in pain. I do not think there is anything wrong with that. We all deal with situations in our own way. I suppose we are all putting more on you at this time. For each of us out here know all this is extremely hard for you, but because of all our love for Ava and your family we look forward to your words. Even just a sentence to know Ava is still hanging tough. I cant wait to see you and Ava on Thursday. Please believe that you have alot to be thankful for. You have a beautiful smart son, a husband we all want and sweet Ava that every one of us could just steal from you for she is beautiful and we all follow her life through you. So Ava will always be apart of everyone not just you and Jamie. Sorry-but you have to share! Keep the faith hon. Just keep kissing and holding your little girl. That is the most perfect part of each day.
God Bless to each of you and we love you very much.
granny and poppy
Jamie
I do the exact same thing when I am in pain, or when I deal with things that are extremley emotional. I have been praying non-stop that ava gains weight and gets stronger. What a VERY positive sign that she is. I ask God every day to surround her with angels of protection, and to take her in his hands and help her to get better. I believe I need to pray harder for you too. You need all the strength you can get. Thank the Lord you have such an amazing family!!!! Please take care of yourself!! I know it's hard, but it is so important. I have never waivered from my thoughts and "feelings" that Ava WILL pull through all of this!!! My prayers are always with Ava and the whole family.
Lisa
Zimmerman Family~
We are thinking of all of you and praying for all of you. Love that you got an awake smile, how special. Take care of each other~
Kelly AJ & Kids
Jamie,
Thanks for letting us know how things are today. Celebrate that weight gain-good going Ava. She really does have adoring fans. This blog has let each of us participate in some small way in knowing and loving her. And we all love you and the boys too.
You are constantly in mind,
Love,
Karen Kellogg
Jamie-
I am so happy to hear that little Ava has gained some weight-that is a big step! I will keep her in my thoughts and prayers, she is a strong little girl.I can't even imagine how great it is to see her beautiful smile.Thank you so much for the updates on how she is doing I know it has to be hard to update when you're feeling so overwhelmed.You all are in my thoughts and prayers daily.
Love,
Kim Runyon
First things first - way to go Ava! What a big girl!
Jamie - My thoughts are with you. I looked back on all of your posts and throughout your blogs I noticed that there are a lot of question marks but they are then followed by exclamation points. I truly believe there are more exclamation points to come!!!
Lots of PRAYERS and lots of love are sent your way -
Emily
Jamie,
We are so glad to hear about Ava's victories. Jamie you just do what ever you have to do to survive, everyone understands! I tend to do the same thing-sometimes you just have to be alone. We just got back from IU. Troy's surgery went well. We will continue to pray for you all.
Take care,
April
Jamie--The hardest part of my cancer journey has been that I had no faith in anyone--including my doctors, my family, my friends, etc. I felt totally alone like no one understood my awful fear of the unknowns. Being a control freak and having one of the most unknown cancers on earth does not mix well--and God had to give me that one?? I finally started looking desparately for signs that things were going to be ok...like my trip to U of M to see my ENT, or finally not getting sick to my stomach every time I saw a cancer commercial, or taking some medicine to sleep and actually sleeping, or meeting three people online who had my rare cancer...I have prayed like crazy to help me just get through my cancer journey--not even for a cure--- and although there are no more answers than before I started, I know my prayers have been answered because I AM getting through this. I think Ava is giving you little signs that all of this will get better--her smiles, her noises, her gaining weight. These are all signs of healing and are signs that your (and all of ours) prayers are being answered. I hope you can believe in it. Trust yourself and give what you can. That's all anyone can ask of you and it WILL be enough.
Thinking of you often--
Molly
Jamie, Karen is absolutely right that Ava has legions of devoted fans, and that we're all rooting for her every day. Without ever having met her, I feel so very attached to your little one! Stay well - I know Ava could not have a more loving or devoted advocate (and mom!) Love, Gretchen
Good morning sweet Ava. I pray you and your mom had a good night of rest. Dad and Bray also. It seems to me that things are looking up. Atleast in the strange way that God does things. Molly's comment was so overwhleming. It sounds like she had a very tough road also, so listen to her Jamie. Molly is a good person and she has known you along time. We all wish we could come up with answers on why this had to happen. As of right now, I see a loving family with lots of friends, a beautiful almost 4 year old boy, and what beautiful little girl. That to me is all a gift of Gods. That little face of Avas puts a smile on everyones faces every single day. She is very special. Hang in there sweetie. This may take a long road, but there are some good signs right now. The first one is sounds that Ava makes, and those wonderful smiles!!!!!!!!!!
love all of you
granny and poppy
Dear Baby (Jamie)
Am so happy to finally, with Cindy's help to know how to talk to you.
What a beautiful baby girl Ava is, you can be so proud of her and even with her little heart working so hard only shows what a fighter she is--better watch out big brother.
I look forward to seeing all of your family Thanksgiving Day. Jamie and Bray thanks for taking such good care of mama
I love you all.
Gram and NaNa
Baby doll Ava,
Every day I can't wait to check on you. Your Mommy's last message is SO GREAT! And so is she.
Everyone writes what I am thinking
so it's hard to say what I feel, but I can't wait to hold you and kiss that sweet neck.
Great-grandpa sends his love too.
LOVE, LOVE, LOVE, LOVE,
Great-Grandma Wegner
Jamie,
That is awesome news that Ava has gained some weight! I feel that every "little" positive step forward is a sign of better things to come for her. She is such a cute little girl. You are all so lucky to have each other.I continue to keep you and your family in my prayers.Take care of each other,,,and God will do the rest.
Andrea
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