So they took Ava off of C-PAP Saturday afternoon. She is doing "okay" on the high flow cannula (oxygen tube in her nose). The doctor says she's "borderline" and may need to go back to C-PAP if her blood gases start to look worse. Right now they are going to ride it out to see how she does.
Ava has been off of the ventilator/breathing tube for a week now. Yesterday we started to inquire about her not having a "voice". (When she cries, hiccups, coughs, etc. no noise comes out.) At first they told us this was "normal" because the breathing tube went through her voice box and that eventually she would make very hoarse sounds. She still hasn't made many sounds. Now we find out that it's possible that there was some damage caused to the tissue of her vocal chords during surgery or the ventilator tube. Tomorrow they will do a scope to assess the vocal chords and then we will speak to an ear, nose and throat specialist to find out the results. Depending on the damage, Ava could simply need help from a speech therapist or she could have no voice at all. We are trying to stay positive and hopeful but under the circumstances it's very hard. My little one already has so much to overcome during the course of her lifetime. We are praying for results tomorrow that are not beyond repair. Please pray for strength in healing little Ava and strength to us to handle all of these "hurdles".
I have held Ava several times now and it feels wonderful. It's hard to believe when I'm holding her and looking into her beautiful face that she has had to struggle every day of her short life. She looks so perfect to me.
Jamie and Brayden will now be coming home on Monday after we know the results of the scope. They will come back Friday night. I am praying for strength for all of us to get through the week without each other.
Candais's baby is doing well and may go to the Moderate Care Unit in the next few days. Her mother was unable to come this weekend because of finances and work schedules. We have made reservations for her boyfriend to come tomorrow by bus so she doesn't have to be here alone. Thank you Erin for helping us schedule that ticket online and to all who have been keeping them in your prayers.
Michelle and Jason Asmus sent Ava the cutest pair of tiny boxing gloves. They are so adorable! She said she thought my little fighter needed a pair. They are laying next to her on her hospital bed. We have taken some pictures and will be posting them soon. Lisa (a friend of Heather's from Wings) sent us several homemade meals. Thank you so much! We can't wait to try them tonight!
I will try to continue to update these posts this week but Jamie will be taking his laptop back to work with him on Tuesday. There is a place on the 8th floor of the hospital where I can access the internet, though. They are only open until 7:00 p.m. so I may not have time to post daily. Thanks for thinking of our family and holding us close to your hearts! As always, we need all the support we can get right now.
Sunday, October 21, 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)
8 comments:
Ava,I am saying extra prayers for you today and tonight. Jamie, pleae please please stay strong. If you need a shoulder, I am here. I can be by your side in no time.
love you
granny and poppy
Girl Jame,
You are an extremely strong person, as you have already proven, you will be ok when Jamie and Bray come home. Remember, everyone is close to your heart and only a phone call away. I have all the confidence in the world that you, Jamie, Bray and especially Ava will be just fine.
i love you all! Give kisses to Ava.
Love Trace
Jamie, I talked to your dad about extra computer. He is checking to see when his new one will be ready and get you that one or one we have now. You need a laptop to keep us all posted on a daily basis. And you need it for you.
Your dad and I will say alot of prayers. Your gram is here tonight. She sends her love.
Fran
Jamie (x2),
We will say an extra special prayer about Ava tonight and hope that you get positive news tomorrow about Little Ava's vocal chords.
Love,
The Altergotts
Jamie,
Good luck with the tests...we will all be praying(we haven't stopped!)Take one day at a time and know that we all wish we could be there with you! Your Howard-Ellis friends miss you!! We really appreciate the updates!
Take care of yourself!!
Lori Brawley
Hi guys--
wow...you all are amazing! I am always amazed by your strength and your love for your family. Ava is so lucky to get you all for parents. I know the vocal cord thing has to be scary...I went through the fear of damage with my neck surgery and luckily came out ok...I do remember them saying that if they did do damage it would just take some time and there were some options to fix it in almost all cases. I will just pray that this will come easy for Ava. (by the way, Dr. Wolf is my ENT at U of M but he may not be for babies--but in my book, he is about as perfect as they come. I also saw a vocal cord specialist but it was brief. But again, Dr. Wolf is my favorite doctor of all time)
I am glad to hear that Candais's baby is doing well--each in her own time...and I feel 100 percent confident Ava will soon be moving toward the same place. Little Miss Sassy Pants won't be down for long!
Jamie--stay strong while Jamie is back home. It sounds like you have been a godsend to Candais and she needs you. I wish we could all be there for you to lean on. Know we are back here in Niles thinking every other thought practically of Ava. Enjoy her and give her lots of love from the Brawley family.
Molly
Jamie,
We will say extra special prayers along with everyone else tonight. She has been through so much already, and made it! The boxing gloves were the perfect things for that little fighter of yours.
Love,
Emilee
Zimmerman Family-
We are praying for positive results tomorrow for Miss Ava. Prayer is powerful and God is in control. She has overcome so much already, and she will get through this as well. We are thinking of your family always!
Becky Asmus
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