As Jamie posted last night, yesterday was not a good day for us here at U of M. Ava developed a fever, and then all hell broke loose. She was having a very difficult time breathing and her abdomen was retracting as she struggled. She looked awful! All of the color left her face and her little eyes looked terribly sick. They tried her back on C-PAP but she still struggled with getting enough oxygen. Finally they intubated her again (put her back on the ventilator). She now looks much more comfortable and they have her on antibiotics as they try to figure out what happened. They are doing cultures to determine if she has pneumonia or another infection but they think another issue was restricting her breathing. They have talked about checking out her diaphragm to see if there is any damage there. Apparently if the nerves were damaged during surgery one diaphragm can get stuck shut (not being able to expand). This could be repaired with surgery and a few stitches, apparently. There is also the problem of her pulmonary artery which they knew would need to be repaired in several weeks. Could this be another cause of the poor oxygen pressure to the lungs? As one father said to us "Even when things are looking good, you're always wondering when the other shoe will drop." We have had many pairs of shoes make an awful lot of racket!
For those of you wondering about the scope they were suppose to do on Ava's vocal chords/voice box, we still have no answers. They told us yesterday that they are unable to do the test because they need Ava to come to them for it and she in not able to leave the ICU Unit yet. We did speak with the ear, nose and throat doctor and he said there is usually some way to repair the damage if her vocal chords were injured. However, the cardiologist just tonight said that damage to her vocal chords may also be the cause of the poor oxygen in her lungs. They hope to take a closer look, but cannot until she is off the ventilator. And so, for now, all we can do is watch and wait and pray a whole lot each day!
So it was a rough day yesterday. And on top of everything we all said a very emotional goodbye as Jamie and Brayden prepared to go home. As you know, they never made it. Boy, was I pleasantly surprised when my boys walked back into Ava's hospital room a few hours after they left for home. Thank you, thank you, Universal for allowing Jamie to be here with our daughter as we try to get her stronger. It is reassuring to know that you understand and we don't have to worry about his position.
Others to thank (there seem to be so many): Thanks to Lisa as we prepare to eat another home cooked meal. Thank you Jenny for your comfort and support last night when things were extremely rough! Thank you Randy for picking up medicine for the dogs today. Thanks to the Kulwicki's for the beautiful baby girl outfits they sent this weekend. Thank you Linda and Boyd Timm for your help and understanding during this difficult time. Thanks Mom and Dad Zimmerman for taking care of the dogs this week. And Kelly Best, your card came to me yesterday at the hospital as Ava was being intubated again. Your words of encouragement touched my heart at just the right moment. Thank you too, Cheryl, Amy and Jess (awesome nurses at U of M) for your outstanding commitment to our little girl's health and healing. We feel so at ease when we know one of you three is taking care of her. Thanks to everyone for all of your thoughts and prayers! Thank you, Heather, for being there for me always, day or night! I know that if I need you, you're always just a phone call/short car ride away. I love you, big sister!
Praying for healing and strength to Ava. (bbbbbbbbbbbbbbbbBBBBBBBBBBB BBBBBBBBBBBBBBB BBBB BBBBBBBBBBB Brayden pressing B again for his name!) Also, strength and courage to get our whole family through each day. Praying for knowledge to all of Ava's doctors and nurses so that they can make the best decisions about her care. Please also pray for Jason Steven as he goes through gallbladder surgery today. We hope he has a speedy recovery! As he was anticipating surgery he was more worried about our dogs than anything. The entire Steven family is so giving and caring! We were told today (as if we didn't already know) that we are still in for a long, tough road. Praying that the road doesn't get too bumpy!
Tuesday, October 23, 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)
12 comments:
Jamie,
Thank you for your thoughts and prayers for Jason. He had a procedure in St. Joe yesterday to remove the blockage to his liver and was finally transported back this evening. He will have his gallbladder removed tomorrow since he got back so late today. He is hoping it will work laproscopic and said he plans on being able to help out with the dogs again by next weekend. If they have to do it the other way, he's looking at six weeks. Please let me know if there is anything else I can do for you or the dogs. I will continue to pray that Ava gets back to the forward steps again.
Thinking of you always,
Sara
Jamie and Jamie--
You still continue to inspire all of us to be better people, to love each other, and to give thanks for all that we are blessed with. Ava is so lucky to be with such a wonderful family.
Again, you are all amazing and a gift to all of us.
Molly
Zimmermans,
I would only hope that my family would pull together as yours has during this difficult time in your lives! This is the time to be together. Be thankful you have one another. My prayers are with all who touch Ava's life. Take care of one another-
Love,
The Brawley's (Chris, Lori, Tate and Connor)
Girl Jamie-
So many things to say to/tell you:
Every single morning on the way to school, I pray aloud for Ava and I SWEAR Monday morning Dane said, "Ava, Ava, Ava" over and over again. I am just sure that means that he is anxiously awaiting her arrival home, so please let her know that. :)
I can only imagine how relieved you are that Universal has been so wonderful and understanding. Jamie has given so much to the company.
This weekend I saw a former student of yours at Wal-Mart that I know you would like to hear about.
Here is another blast from your past---Brandon Van Tuyl's aunt, Roxanne, gave me a massage today. She was going to pass along Ava's information to Brandon and his mom Terri.
I am so glad that Jenny Johnson was with you this weekend AND that your boys came back!
You are capable of tackling anything that comes your way. Please know that Ava continues to be in our prayers and thoughts each and every day.
Love,
Michelle
I am so sorry that your road is being so rocky. I wish so badly that there was something that I could do, so I can only imagine how powerless you must feel as you watch your sweet little daughter. I am so glad that you were able to hold her if even for a little bit to get you through until you are able to hold her again. While you wait for that day, hold on to each other.
Love,
Emilee
Ava and Bray. Poppy and I and all the rest of family missed you here tonight. But you were both talked about and missed so much. Im coming up tomorrow with treats for my Bray!!!! I am wearing the Motts hospital bracelet and so is your Aunt Heath and Uncle Bill. I am saying so many prayers to you Ava and to your mom and dad. Whomever is reading this I ask of you to bow your heads and sa"please Dear God, do the right thing and take care of this wonderful family, give them strenth and courage. Most of all take very good care of this wanted and loved little girl. Amen."
Sweet dreams Ava Christine
granny and poppy
Jamie and Jamie,
If you only knew how many people are just lurking out here not necessarily writing comments but following Ava's progress like a religion! I have forwarded your blog to all of my co-workers and my mom's church has Ava on their prayer list. You are held so close by complete strangers and friends and family alike.
Ava remains on our minds and in our hearts constantly.
We love you guys,
Johnny and Pam
Quinners and Jakey
Hi Zimmerman's,
You are unbelievalble! As is that sweet little girl of yours. Hold onto one another and the faith that God is with you and Ava always. We miss you at Howard/Ellis Jamie. Your entire school family has you, Ava, and your family in their constant prayers. If you need any of us, we're here.
Love,
Beth Altergott
Jaime,
Still saying prayers...
I admire your love for one another and your strength that you share. Your family is a true relfection of the human spirit and what we can endure.
Be sure you are taking care of yourself,
Cherie S.
Hi Jamie and Jamie,
We just want you to know that we are praying for Ava and your family. We admire your strength and Ava is so blessed to have parents like you and a big brother like Brayden. And also an awesome aunt like Heather. She loves you guys sooo much. Take care,
God's peace,
Larry, Kathy, Evan and Matthew
Just a quick note to let you know we are thinking of you. Your posts are so emotional. We hear the stress, tears and the occasional smile in your words, above all the love and the strength. So glad Jamie came back to be with you, the four of you together can find the strength to get through each day. As we read your posts we will continue to pray with you, cry with you, and laugh with you. Your little Ava has touched so many lives and hearts in such a short time she is a very special little girl.
with love, xox
Hey Mrs.Z and Jamie,
I am very very sorry that things aren't going quite well right now but I know for a fact that you guys will get through it and I know this from the experience of having Mrs. Z as a teacher in the past and a friend today. Everything you tought me then I carry with me now and I still use those things everyday. I just want you guys to know how much I care about you and your family and I wish I could help in some way. You ever need anything you just call. I'll be praying for all of you.
Love Always,
Evan McLaughlin
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