Ava's MRI results showed that the narrowed pulmonary artery on the left side of her heart was only allowing her left lung to do 20% of the work because of the low blood flow. Obviously that would mean that her right lung was performing at 80%. The cardiologist explained that a "normal" heart would be sending 40% to the left lung and 60% to the right. Therefore, Ava (at this time) is not in need of another bypass surgery. HOORAY! They are not in any rush to repair the problem right away until she has recovered a bit from her first bypass. In four to six weeks they plan to do a catheretization of the left pulmonary artery using a balloon or a stent. They assured us that this is a pretty simple procedure and that she would only need to stay in the hospital a few days. It is possible that we could take her home for a few weeks and then return for this procedure. Let's hope and pray that she will continue to progress and will be home by then!
Ava "sprinted" (came off her breathing/oxygen tube) once last night for an hour. She did beautifully. Because of her rough day in the MRI they did not try it again today. They plan to "sprint" her again tomorrow a few times. The cardiologist believes that she will be fully extibated (off the breathing/oxygen tube) by the end of the weekend. Thanking God again for these small positive steps she has taken!
On a maternal note: Ava is still tolerating breastmilk well. We also got to change her poopy diaper and it felt so good to be involved in her care. It is so hard not being able to hold her but we are hoping that the time will soon come. She would have to be completely off her breathing tube and all of her blood pressure medications (which they are slowly weaning now).
On the home front: We'd like to thank Sara Grishaber and her brother Jason for helping take care of the house and dogs while we are here at U of M. Brayden comes tomorrow and we can't wait to see him. He went over to our house tonight and got a little emotional on the phone with me. This is the first time he has really broken down. He just said that he misses me and wanted to see me right now. He also said that he was a little bit sad. It breaks my heart not seeing him every day and not tucking him every night.
Happy that Troy Meek's surgery went well. Still praying for the family. As always, thanks everyone, your positive support and prayers mean the world to us right now!
Friday, October 12, 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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October
(28)
- Turning a corner?
- Holding Tight!
- Extubated Again!
- Happy Birthday Ava!
- Quick Update
- sick day at Ronald McDonald's
- Life's Rainbows
- One Step Forward, Two Steps Back
- U-Turn on I94
- Last post from me
- Even More to Overcome!
- The End of C-PAP - Coming Soon???
- Cherishing Every Moment!
- In Her Own Good Time!
- Short and Sweet
- Another message from me
- Ava's on Viagra! What?
- A lot to be thankful for
- Ava's update
- Brayden's note to Ava
- MRI Results
- A different note
- Another Day of Progress for Ava!
- Courage is not always big and loud, sometimes it's...
- More to the roller coaster ride!
- Big Brother Brayden
- UPDATE.....Ava is slowly getting better!
- Trying to keep this up to date
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October
(28)
11 comments:
Congratulations on the poopey diaper and many many more to come!!
Mom called me this afternoon and told me about Ava's MRI, we are so excited that things are going well.
Jamie & Jamie please know that I want to be there all of the time with you and Ava and I will get there as soon as possible. I love you all so much and again, I know that Ava is going to be just fine.
About Bray, he is such a special little guy and he is tougher that you think. He will be fine and I am sure he misses you as much as you miss him. In a few short hours he will be with you again.
Take care of yourselves and give Ava a big kiss and loves from Aunt Trace and Uncle Mark!
We love U!
Jamie,
Belated Congratulations on the birth of your beautiful little girl. She is quite the fighter and a wonderful addition to your family.
Thank you for keeping us all updated with your website. There are so many members of your school family that care and it is nice not to have to wait on word of mouth to stay up to speed or to have to keep asking Heather how everyone is.
Dawn Brooks
So glad that the MRI went well and that you are getting little bits of positive news. I hope that it continues to be good all weekend.
Love,
Emilee
Dear Jamie and Jamie,
So very happy to hear of Ava's good news on the MRI. I will pray for her continued strength and "Miss Sassy Pantsness" in preparation for her cath in 4-6 weeks. How wonderful that she is able to get nourishment from your breast milk, Jamie, and how awesome that God has given you the ability to produce milk even through all this stress. And Daddy Jamie, your wife's message to you on this blog the other night really touched my heart......Ava couldn't have been "assigned" to two more loving, capable parents. I'll bet that at one time you never thought a crappy diaper could be such a huge blessing! Great news also on her "Sprints." Little Bray has been such a trooper through all this, sweet little spirit that he is. I think that going back to your home probably made him more aware of your absence and I am so glad you will see each other tomorrow. I know it had to be extremely hard for you to hear his little sad voice over the phone. Trials like this really make you think about what's really precious & important in life, don't they? And though it's been said that we aren't given more than we can handle, what is MOST important is that you add the rest to that comment....We aren't given more than we can handle WITH GOD and through His strength. So glad you are feeling His presence at this time, and asking for His help. Take care of yourselves, you are both so strong and wise. I love you and your babies.
Your daughter is absolutely beautiful! What a blessing to have her in your life!! I pray everyday that God is with you during this time, that he gives you strength and comfort through all of this. Know that when you are unable to hold your amazing little girl, and though it has to be difficult, that God is holding her for you and taking good care of her! She feels all of the love that surrounds her! Remember that he is always in control, all of the positive results are an example of this. What exciting news to here she is doing so well!!! I will continue to pray for her and your family. And hope that she is able to come home soon so that you can create some wonderful, beautiful memories with your new little girl!
Thank you for allowing people to view this sight and keep us all updated. More people are thinking and praying for her than you could possibly imagine. May God continue to bless your family!
Jamie and Jamie,
It's so wonderful to hear such positive news. Everyones prayers are being heard. It is so good to hear about you guys coming home soon! We'll look forward to hearing more good news!!
Love,
Sara & Mark
Jamie & Jamie,
Ava is so beautiful! I just wanted to tell you that I am thinking and praying for all of you. Every bit of progress is a gift from God and I know that there will be so many more! I am glad to hear that she is a fighter just like everyone else in her family. Hang in there and let me know if there is anything that I can do! ~ Tiffany
Yeah!!! I'm so happy to hear the MRI report. I continue to pray that Ava Christine gets stronger every day, in hopes of a clearence to come home.
Love,
Janelle
So happy to hear of good news!! Every little step is so important! Thank you for keeping everyone updated and know that we are all thinking of you and your family and praying for you all! Family is soooo important in times like these.
Barb,Dana, and Heather Daniels
DEAR, DEAR, Jamie & Jamie,
We saw Brayden when we went for Jamison's 6th birthday, and he was so excited to tell me about his sister Ava. He is so adorable; in fact the room was FULL of gorgeous boys. Can't wait to add your darling baby GIRL to the mix.
And we saw first-hand how well they are all taking care of Brayden.
We are SO PROUD of ALL OF YOU, and LOVE YOU even more than that!
I didn't get anywhere trying to send a message any other way, so am going to try "anonymous" this time.
Am so grateful to Molly Brawley and "Aunt Trace" for this blog.
I eagerly check every day since I was told about it, and along with untold numbers of friends and relatives, we think about you UMPTEEN times a day.
LOVE LOVE LOVE,
Grandma & Grandpa Wegner/
Great-Grandma & Great-Grandpa
We are so happy to hear the MRI results. Hang in there. May Ava continue to get better. We are praying for your whole family.
Take care,
The Meek's
P.S. Thank you for thinking of Troy, he is recovery well.
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