Ava is holding steady. She is still on C-PAP but is doing well. They will continue to wean her pressure and oxygen output on this little oxygen mask that goes over her nose. They already dropped her pressure once today on the C-PAP. The mask is rather pathetic looking! In fact, they call it the elephant mask because it looks like she has a long trunk coming from her nose. I will try to post some new pictures tomorrow.
Ava's blood pressure, oxygen levels, and blood gases are all looking good. They started her on an antibiotic today because her white blood cells were high and they were concerned about infection. They are less concerned now because everything went well today. They will check the white blood cell count again tomorrow at 4:00 a.m. to see if the medication has helped. Just praying they have come down into a normal range.
Ava also started a new anti-arrhythmic medication because her heartbeats per minute were bouncing all over the place the last few days. You may remember they tried to do this on Saturday but she had an allergic reaction to the medication. We found out yesterday that the fluid in her chest that was restricting her left lung is a "fatty" fluid. Because of this she will have to be on a special formula with no fat content. (She's not on feedings anyway while she's on C-PAP.) She may have to be on this formula for a long time. This is disappointing to me because I was so happy when she finally got my breastmilk. Just hoping she will be able to have my milk again someday.
Thank you to Emilee Lake for the delicious home cooked meals she sent. You have no idea how nice it was to eat something other than take-out, delivery, fast food or cafeteria food. Thank you, also, Carol Eull for the muffins and Michelle Asmus for the cookies. We have enjoyed everything you've all sent.
Grandma, Papa, Aunt Tracy and Uncle Mark got here today. They can't believe how good Ava looks (even with her elephant mask!) Molly and Ginger Brawley stopped in and saw Ava but we were at lunch and missed them. Molly said that she calmed her soul and gave her strength to get through a difficult test at U of M. That's the kind of power this little girl has over all of us. She is so precious! She is so fortunate to have so much love from so many people.
Keep praying for our entire family please! Your prayers have been working as Ava SLOWLY progresses. The surgeon (Dr. Hirsh) told us today that Ava's doing well but getting out of ICU and onto a regular floor is going to take more time than expected. Preparing myself to be here for many more weeks is not easy. In the end, when we get to take our little girl home, though, it will all be worth it!
Wednesday, October 17, 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)
9 comments:
Jamie,
It will so all be worth it in the end when you get to take that little angel home with you. I can only imagine how you must feel about having to be there for many more weeks. I guess just reassure yourself by knowing that she is in the best hands. It is amazing how they know how to take care of her so well!
Thanks for the update. It is late. Get some sleep!
Love,
Emilee
(You know I am a night owl!)
Good morning sweet Ava. God Bless another day and know we love you so much.
Granny and Poppy
Jamie,
Mark says that Ava is a typical girl with doing everything on her schedule. I feel that is more a male quality with him, but anyway. So glad to hear that her levels are looking good. She is surely a fighter! We can't wait to have you all back home again!
Keeping you in our prayers,
The Grishaber's
Hi Zimmerman family!
Glad to hear that Ava is getting stronger! I don't know if you remember, but I would get so frustrated when Kade was an infant and I had to do "breathing treatments" every 3 hours and it was so hard watching him trying to breathe. But seeing what all of you are going through makes me realize that it's not that bad! He still has to do treatments and he just turned 2! But not nearly as much as he used too. Isn't it AMAZING how strong kids can be especially infants!! They are stronger than us adults! Thanks for the updates and I can't wait to see new pics. Since she is changing daily and getting even more beautiful! Take care Missy
Bray Bray,
Thank you for bringing me to the doctor. And thank you for sharing your toys with me. It was fun doing those funny pictures on my mom's camera. Can you come to my house to play with my toys? Lets have fun at my house and sing songs with my guitar. Let's play hot rod and pretend to have a motorcycle. We can play Batman and Spiderman super heros! I like your baby sister.
Bye Bray Bray.
Your friend,
Nathan
Jamie,
I have been watching your site every day and have struggled to find words that might help in some small way. I simply can't. Ava is a strong, beautiful and amazing gift. We think of you often and continually offer our silent support.
Tori and family
Jamie & Jamie,
God Bless you and your beautiful daugter. Your web site is touching.
Know that your whole family will be in my thoughts and prayers.
Take care Trish Dalenberg
Jamie,
I am so glad to hear of Ava's progress! Hang in there and know that we are all still hoping and praying for you all. You are making the best of your situation...that is all that you can do! Thank you for keeping us informed. The new pictures are beautiful- thank you for sharing.
Take care of yourself and your family,
Lori Brawley
Hi Mrs. Zimmerman, Just wanted you to know that I am praying for Ava every night and she is so beautiful. Hope you come home soon.
Love, Chloe Asmus
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