Ava is doing okay today. They took her chest drainage tube out this morning (finally). Ava is retaining a lot of fluid again but they have increased her diuretics to help her urinate more. She is back on Portigen (the low fat formula) at 50cc every 3 hours and 24 calories. She is tolerating this well so they will take her off the TPN and lipids tonight.
They did an ECHO today and ruled out the possibility of damage to her diaphragm because it showed normal movement during the test. They will continue to keep an eye on the possible pneumonia but I don't think they're convinced that is what caused the fever/infection on Monday. Nothing has shown up on her cultures and her white blood cell count is within a normal range (5.9 down from 9.75 yesterday). This leaves them still searching for answers about the low pressure to her lungs which put her back on the ventilator. Spoke to Dr. Hirsh (Ava's surgeon) today and she did not seem majorly convinced that the vocal chords were the cause of these issues either. She said that babies that have that kind of damage fail earlier than Ava did to be off the ventilator. She says that breathing on her own is a lot of work especially since she's never done it without their support. We just have to wait until her infection is completely gone and she is weaned down on the ventilator pressure a bit to try it again. We are just praying that it goes well next time and that they are able to determine what's going wrong.
Fran and Carol Eull visited today. Of course "Granny Fran" brought gifts for everyone. We are now all sporting a rubber bracelet which reads "GO BLUE for Mott" to support our little angel. As if we weren't already huge U of M fans! Thanks Fran for all the goodies - I love the blanket with the kids names on it! Thank you Carol for offering to be here whenever we need you.
We tried to persuade Brayden to go home to Aunt Heather's for a couple of days to get out of the hospital for a while. He has now been here for twelve days. While he never complains and he is very well behaved, we feel sorry for him spending his days in a hospital. He did not want to go, though. After he cried a few tears and said that he wanted to go to bed with me tonight (to "shnuggle" as he says) we kept him with us. I am torn between what he needs most. Is it more important for him to have a sense of normalcy or to be with his parents? He brings us so many smiles throughout the day. Last night we were all giggling as we played follow the leader out of the hospital. I'm sure we looked like idiots as we turned in circles, sat on benches, walked backwards, etc. But as Brayden tried to catch his breath from laughing so hard, I really didn't care about the crazy looks people were giving us. It is these lighthearted moments that we all need right now!
Thank you, Emilee Lake, for another home cooked meal. We had frozen your soup and just ate it tonight. It was delicious! Hoping that Jason Steven's surgery went well today and praying for his quick recovery.
Leaving you with a new quote that is on the window at Mott. Under a picture of a rainbow it says "It takes both sun and rain to make life's rainbows!" Please continue to pray for our little rainbow!
Wednesday, October 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)
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)
5 comments:
Good morning Ava!!!! and good morning to you also Bray! Both of you are lifes Rainbows!! To Jamie, what is normalcy anyway? Life is somewhat what we make it. We need all the laughter we can get. If Bray brings that to your hearts, that is a wonderful thing. He loves you so much, and he is happy being with you. I got to hold my Avas hand yesterday. That is one of lifes wonderful things. ava christine, you are a beauty, and I just know you will come out of all this with alot of rainbows. To those of you whom have not seen Ava yet, she is beautiful and perfect!!! Ava and Bray, granny and poppy love you so much. Please have another good day. To Bray, "granny wants to shnuggle"!
Rest well today Ava.
all our love
granny and poppy
Hi Ava, Mrs. Z, Jamie, and Bray,
I'm so glad to hear that Ava was doing okay yesterday and I hope everything is going good still. I'm so sorry that I didn't write you guys before, my family and I just found out about Ava yesterday from Heather, she thought Jan would of told my mom or Barb Daniels but no one did so she called yesterday to let us know. I prayed for all of you last night and I will tonight also. I saw the pictures of Ava, she is soooo beautiful. I hope tomorrow and the next and the next will be a good day for Ava also. God bless you guys.
Love Always,
Evan McLaughlin
Brayden's normalcy is to be with his mom, dad and sister - you've figured out what's best for your entire family!
We'll keep you in our prayers!
Emily & Randy
Hi Jamie and Jamie! This is Lori Baxter and I just heard about your little girl and have been reading through the blog today. I am so sorry for all that you are going through and I will most certainly keep you and your family in my prayers.
BTW -She is such a beautiful baby!
Hoping that you will all be home soon!
Hi Jamie,
Just wanted to tell you how beautiful your little girl is. We are keeping her and your family in our prayers,,,nothing but good thoughts coming your way. Ryan wants me to tell you, "your baby girl is cute,and I think everything will be ok."
Take care,The Clutters
Tyler says"Hi Mrs.Z.,Ava is cute and I think she will be fine as soon as the doctors finsh taking care of her."
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