Still in Moderate Care and Ava's doing okay. Monday through Wednesday Ava had some SVTs (high heart rate for a sustained amount of time) which is concerning. Then we had a few less worrisome days and now we're back to the SVTs. The medication that she is on to help control and regulate her heart rate causes her blood pressure to drop. So they often hold her meds when her blood pressure is already low. It's a vicious cycle. They held her Enderal at 6:00 a.m. and by 10:00 a.m. she was SVTing. So far this afternoon we haven't had any more(knock on wood).
Ava also threw up a couple times on Tuesday and so we are tube feeding again for awhile. Not sure if this is due to gulping and refluxing or a reaction to the SVTs.
Ava has been off of the "whiff" of oxygen since Wednesday and her saturations look good still. She definitely lets us know when she is unhappy. You can hear her cries from down the hall now. She is gaining some weight and is up to about 7 pounds 11 ounces. Right now an ECHO is scheduled for Friday and then we will reevaluate the plan for surgery. Please pray that her leaky valve and ventricular function hasn't gotten worse so that surgery isn't in the immediate future.
Daddy is at the hospital with Ava right now and I'm back at Ronald McDonald House letting Brayden take a nap. He's got a bit of a cold again and so we have been taking shifts between he and Ava. Jamie and I don't see much of each other this way but it's more important that we be with the kids right now.
Having a difficult time thinking about the holidays. It's all a bit depressing. All the little things that I guess I've always taken for granted. Where will our lives be in another month? Sometimes I still can't believe this is happening to us. This is something you hear about that happens to other people. You never dream it will happen to someone you love.
I am going to try to come home for Brayden's birthday on Thursday. If I am able to I'll probably stay the night, too. Carol Eull (a close family friend) will come here to stay with Ava since all of our family will be at Bray's party. Carol is a student nurse right now and I know she'll take great care of Ava while I'm gone. I am still feeling very uneasy about leaving but I cannot imagine not being with my son for his birthday. Please pray that this week will go smoothly so that I can be with Brayden at home for his birthday.
Thank you to my family for traveling to Ann Arbor for Thanksgiving to be with us. Thanks Laura for the beautiful frame and picture of Bray and Ava. Thanks Fran for the diaper bag and food. It was so nice to see Becca, Taner, Nathan, Aunt Kathy and Cheli today. Wilma, I love the outfit you bought Ava. And to Amy Archer and Peg Maiers, thanks for your inspiring words this week. I really needed that this week.
Please, please, please, continue to keep my baby in your prayers. She's had a rough eight weeks and still has a long, bumpy road to travel!
Saturday, November 24, 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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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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10 comments:
Ava--
Keep putting on the ounces, girl!!
Bray--
Get better soon so you can enjoy your birthday week!!
Love, Michelle
Jamie~Jamie~Brayden~Ava,
Don't be depressed about the holidays this is the season miracles happen, just believe!!! Hang in there, we are praying that you will "all" be home sitting around your own X-mas Tree Christmas Eve, enjoying Brayden and Avas' smiles as they stare at the twinkling lights and put cookies and carrots out for Santa and Rudolph. Miracles happen and if anyone deserves one its your "Sweet Ava"!! Believe it Jamie, take a deep breath, come home, regain your strength and enjoy Braydens' Birthday, and all will be well. Don't worry about Ava while your home, that is just a stupid thing to say since it will be impossible not to worry. Just know that inches, feet or miles away she feels your presence in her heart, as much as she is in yours. Same for you Jamie when you are home, during the week to work, Ava knows you've left pieces of your heart with her, and knows your love for her is always there. Take care of each other. Our thoughts and prayers are with you always~
Good night Ava. I was so glad to hear from your mom. Please keep gaining weight. And please-everyone-say lots of prayers. Every day-but for Bray this week also. he needs his mom also. And yes, I agree, Christmas is when miracles happen. Ava thus far is truly a miracle, and will continue to be so. Jamie, Carol will take care of Ava as if she were her own. You know that.
Good night all of you. jamie-if you ever feel like you cant be alone, just call and Ill plan to stay. Any of us whom love you would be.
sweet dreams
granny and poppy
Jamie,
I bet it is wonderful to hear Ava's voice. She really has had a very rocky road so far, but has survived! She is so tough. We continue to think of you and pray for you. I hope so badly that you will be able to come home and enjoy Brayden's birthday. Your children are so lucky to have you!
You are such a devoted mother!
Love,
Emilee
Good morning ava!!!! Please let your day be a good one.
love always
granny and poppy
Hello Everyone!
Still missing you and waiting to hold and hear your sweet voice up close and personal!
Jamie, I'm working on getting some of Ava's gowns fixed with snaps so that she can wear her own clothing and not the blue stuff from the hospital. I will send them with the next person that goes to Ann Arbor.
Give kisses and hugs from Aunt Trace and Uncle Mark!
Love U!
Trace
Goodnight Ava and Jamie. Sleep tight and sweet dreams.
love you both
granny and poppy
I'm so glas that you had a nice Thankgiving with your family! You are all still in our prayers daily and I agree also - this is the season for miracles - Keep hoping and praying! I hope that Brayden is feeling better also - and you come home and enjoy his special day - he will be so excited to have you there! Carol will take good care of Ava. Keep the faith Jamie!
Ginger Andres
We are so glad that you had a nice Thanksgiving as a family. Remember, it's not the location, it's the people you are with that matter. You had all of those special people there with you and that is all that matters. We are so glad to hear that Ava is gaining weight. A positive step!
As the holidays approach keep in mind that although this isn't where you expected to be, your wonderful family will be right beside you. Your wonderful friends will be thinking of you every moment and sending all of thier love and prayers. This is the season of miracles!
Good morning little Ava. This is short(thank goodness!) for I have to go shopping for your big brother!!!!! It will be Brays special day on Thursday! Keep doing good little one. We all need you!
love you
granny and poppy
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