Talked to Dr Hirsch today and the plan has now changed for surgery. They wanted Ava to get bigger so the leaky valve could increase in diameter. They originally thought this might take 3-6 months. The diameter of her valve would need to be 15 mm in order to put in a mechanical valve. The echo showed that because of the regurgitation her valve is almost that big now. It is at 14 mm. In two weeks they will repeat the echo and if the valve diameter is the correct size they will do the valve replacement surgery the following week. That is the week before Christmas. If it's not 15 mm in two weeks they'll do surgery after the holidays. Dr. Hirsch said that the new valve would last her way into adolescence. The conduit from her first surgery would need to be replaced much sooner (in 2 to 5 years).
Dr. Hirsch expects this surgery to be much easier on Ava. It is still open heart surgery with a lot of risks but it's not as major as the first. She's not as sick as she was for the first surgery and she's no longer a newborn. Dr. Hirsch says Ava is a "tough nut". She expects her to be in the hospital about three weeks after surgery. She says that Ava would have been home a long time ago if she didn't have this leaky valve. She has had to work so much harder to recover because of that deficiency. Once the valve is replaced she expects Ava to have a much better functioning heart. This will help her feel so much better and not have to work so hard. I pray Dr. Hirsch is right and Ava can start to recover normally and get home.
While it is scary to think of another surgery so soon, she will need it sooner or later anyways. If she is ready now, it may as well be sooner. The holidays will be rough, though, I'm sure. It also made me nervous to think of taking Ava home between surgeries when her heart is not functioning as well as it could. Hopefully she'll be feeling much better by the time we finally get to take her home.
Ava had a great day today. She was very alert and content. I got lots of smiles! I love days like this.
Thank you to our families for making Brayden's birthday so special. Thank you, Tracy for modifying some of Ava's clothes so she can wear them with all of her wires. Now she doesn't have to wear a blue hospital gown every day. Thank you Mark Grishaber and Dave Landon for offering to winterize and store the boat for us. My dad is suppose to take care of it for us this week.
Praying that my sweet baby girl will be tough enough to endure another surgery and come home with us!
Saturday, December 1, 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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9 comments:
Jamie,
I am so glad you had a wonderful day with Ava. It is so nice to see those smiles in all her pictures.
I know there is still quite a road ahead for you, however it must feel nice to finally hear the Doctor tell you the plan that will bring her home.
It also must be nice to hear that once the leaky valve is taken care of she will not have to work so hard to breathe.
Way to go Ava, on growing faster than they originally thought!
You are always in my thoughts and prayers!!!
Janelle
Jamie and Jamie,
YES, she is one tough cookie and this is only one more hurdle that she will LEAP over. She's a fighter and has proven that over and over again!
Both of you take care of yourselves as well as Ava and Bray.
More jammies to come so that she can wear her own clothes.
See you in a couple of weeks!
Love U All!
Trace
Jamie- Ava sure is a "tough nut". I know it must be really scary to think about Ava having another surgery so soon, but I bet it feels great to have a plan. I know with Troy the waiting and not knowing is so hard. It always makes me feel a litle better to know the next step and have a plan of attack. We just have to take one hurdle at a time-overcome the challenges and go on to the next one. I am so glad to hear that Ava seems to be having some great days-her smile is so sweet! We continue to pray for Ava daily.
Take care,
April
Jamie,
I am so excited to read about the plan for Ava. It must be a relief to have a better idea of what is to come in the next month. The end of this part of your family's journey seems to at least be in sight now.
Continue to enjoy your blessings!
Dawn Brooks
Jamie,
Wow, great progress for Ava! She is too darn cute. In the picture of her that says "bundled up" underneath I think she looks SOOOO much like Justin! Something about the look on her face!
I'm so glad that you have some answers to your questions and a direction for continued progress. I know waiting for the answers is the hardest part.
Keep up your spirits and know that we are all out here in Cyberland cheering you guys on and praying constantly!
Love,
The Brawley's
Johnny and Pam
Quinners and Jakey
Good morning sweet ava!!!!!!! We are so glad you are still being our "tough little cookie"!!!!!!!!!! Lord, it seems like it has been forever since I have seen you. I can't wait to come and see you again. Granny wants to hold you so very bad!!!I really believe this will be a Christmas of miracles. You are "our" little miracle!!!Hang in there sweet baby!!! You have alot of people loving you and pulling for you. Have another great day little lady.
we love you and you have our prayers
granny and poppy
Jamie-
It is so good to hear talk of Ava's eventual homecoming. Maybe you will all be home in time for your birthday.
Love, M
Dear Zimmerman family,
Isn't it amazing how your life can change from day to day and it all becomes so....almost normal. One day at a time, one hour at a time, one minute at a time and it all seems to go so slowly. Then a month later you look back and see how far you've come. A year later you will all be having breakfast and be absolutely amazed by yourselves and your family. Cherish every second. Ava has been so strong and amazed the doctors and staff and she will continue to amaze them. Best wishes and we are keeping you all in our prayers.
Love,
Barb, Dana and Heather Daniels
Jamie, Jamie, and Bray,
What a wonderful little fighter you have there!! My thoughts are with all of you everyday. She is growing so fast and hopefully she will be home soon. Take care of yourselves so you don't get sick. My thoughts and prayers go out to you all.
Colleen
(Wings etc. Benton Harbor)
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