It has been so busy here lately. Now that Ava is in Moderate Care I rarely leave her room. The nurses do a lot less caregiving when a parent is there. They quickly teach you to help with medicines, feeding tubes, etc. Ava is taking 60 ccs of formula (fortified with 30 extra calories) every 3 hours. We usually feed her between 30-40 ccs by mouth and then put the rest down her NG tube (tube that goes down her nose and into her stomach.) She gulps down her feeds so quickly that she gets worn out easily. Dr. Hirsch explained that we don't want her to work so hard that she is losing calories. That would defeat the purpose.
The last few days have been fine but not without glitches. Ava's heartrate was high again on Monday and continues to be somewhat irregular. They are increasing her cardiac meds which sometimes causes her blood pressure to drop. Tonight she was pale and working a bit harder to breath so I had them page the cardiologist who adjusted her diuretics. Everything is such a balancing act. Always something to worry about.
Jamie and Brayden will be back tomorrow night and I'm so happy they'll be able to stay four nights. Both sides of our family will be here for Thanksgiving. We have reservations for 18 people. While it certainly won't be the same home-cooked feast we are used to at least our whole family will be together. We certainly have a great deal to be thankful for!
I am considering coming home next Thursday for Brayden's birthday. This of course depends on how Ava is doing. We'll see if it all works out.
So many people to thank: Thanks Molly for your comment which made me feel that someone else understands in some way how I am feeling. You and Troy Meek continue to be in my prayers daily. Thank you Michelle and Jason for visiting this weekend and for the gifts. (We are not always thanking you as we are crawling, hopping, and running around the room with a crazy elephant mask on!) Thank you to Randy, Josh and Becky for all of the food and gifts. I cannot believe how generous you are when we barely know each other. Thank you to Jenny's friend, Heidi, from work who sent gifts our way. We have never even met before! People are so kind! I will be praying for your child as she goes through surgery in December. Thank you Beth and Lori who sent me the sweetest ornament which reads "A mother holds her children's hands for awhile, their hearts forever." Thank you to the staff at Complete Chiropractic for the generous donation. Thank you to Frank and UFP again for being understanding about Jamie missing work to be here during the difficult times.
Please continue to keep Ava in your prayers. I struggle each day to remain strong and positive, not knowing what the future holds. It helps to know there are so many of you out there thinking of us. Your words of encouragement are always appreciated.
Tuesday, November 20, 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)
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2007
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November
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- ECHO results
- 8 Pounds Yet?
- "Status Quo"
- Just an Update
- Happy Thanksgiving from Aunt Trace
- U of M Report
- What will the future hold?
- Jamie, this post is for you. Ava WILL get through ...
- Jamie wanted me to blog something, but her last bl...
- Broken Hearted
- Not Quite Ready to Leave ICU
- Not Even A "Whiff"
- Team Meeting
- Finally Some Good News!
- Watching and Waiting
- Quick Update
- 3rd Time is a Charm?
- For Mommy & Daddy
- Rough Times at U of M
- To good to be true
- Out of ICU!
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14 comments:
Jamie,
You truly do have so many people pulling for you. The lady who made Ava's bag and blanket just called me yesterday to ask how she was doing. She said that her church has Ava on their list of people they pray for daily. If sending our love and prayers are all that we can do, believe me, she is gets an abundance. It is true. Your story has touched so many people, that even perfect strangers want to help.
I hope that you have a peaceful Thanksgiving with your family.
Love,
Emilee
Zimmerman family:
From my family to yours - may you all have a wonderful Thanksgiving together. Enjoy your time with your family, especially Jamie and Brayden! You all continue to be in our prayers each day. We are all pulling for Ava (and you). Stay strong - everyone is here if you need anything at all - big or small. It is Thanksgiving - we are all thankfull that Miss Ava is here and growing stronger each day! Keep the faith!
Ginger Andres
Good morning Ms. Ava! Another day, and you have survived hurdles. Just keep being strong little. Your whole family needs you so much. I get to see you tomorrow! I am so excited about that. I just want to hold those little fingers of yours again. To everyone that writes and gives gifts and thoughts, words of wisdom, and just plain cares about jamie and Ava, thank you and may all of you have a wonderful Thanksgiving! As you know, we will be with Jamie and jamie and Bray. Plus visit ava. To my side of family, that cannot join us, you will be missed and I love you very much, but I know you understand. Thank you. Times like this makes me know how blessed I am. and times like this make me know how many good people are out there. We love you Ava! I am so glad your daddy and big brother will be with you tonight.
love always
granny and poppy
Jamie & Jamie,
Every time I think about Ava smiling it makes me smile too...how wonderful! Happy Thanksgiving to a precious and courageous little family. I'm so happy that you will have four days/nights together, and that you'll all be together on Thanksgiving. Have fun with those precious kids! Hugs to Brayden & Ava.
LOVE YOU GUYS,
Aunt Stace
Jamie -
It's great news that Ava has such an appetite! I'm glad you will be with your family tonight and over the holiday.
As I count the many things I am thankful for this Thanksgiving, I want you to know that I am thankful you and Jamie are our friends. You are an amazing example of strength, family and commitment - it's truly inspiring.
We will continue to pray for Ava and your family.
Emily
Jamie, Jamie, Brayden, & Ava-
Just wanted to say Happy Thanksgiving to the four of you. I am so glad you will be with your family on Thanksgiving Day. Little Miss Ava - Thank you! for reminding so many of us the true spirit and meaning of the holiday! You are truly such a special blessing and inspire so many of us with your strength! (You too Jamie, Jamie, & Brayden). We pray you have a wonderful and peaceful Thanksgiving!
God Bless!
Rob, Korrie, Alex, Lexi, & Aiden Krueger
Happy Thanksgiving Zimmermans!
Love,
The Altergotts
Jamie & Jamie, Braden & Ava,
Thinking of you this Thanksgiving holiday and always.
LOTS of LOVE,
All The Eull's
Good night sweet Ava and cutie pie Brayden!! and if all your cousins are there, good night to them also and we love all of you. We will see you tomorrow!!!!!!!!!!!!!!!!!
We wont forget the cooler Jame. and we have a little frozen food, and a couple things for you. I do pray all is well. soo you tomorrow.
good night and may God watch over all of you
granny and poppy
Happy Thanksgiving Zimmermans and Weavers! So glad you will all be together. What a wonderful family to all make the sacrifice to come up to be with you - we know how hard it must be. Saw Jim tonight - didn't get to really talk to him but wanted to tell him to give Ava a kiss for us! We will be thinking of all of you and hoping for a great day for Ava.
Love,
Theresa & Duffy
Happy Thanksgiving Jamie, Jamie, Brayden and Ava!
We all have so much to be thankful for this year, especially for that beautiful little girl. We are so sorry that we couldn't make it there, but know that we pray daily and think of all of you often. Give kisses and hugs to Bray and Ava, hope to see you soon.
PS Tell Gram & PaPa to be careful and not get caught when they go out to "burn one"! HaHa
We love you!
Mark & Tracy
Happy thanksgiving Weaver's and Zimmerman's!!! Although this is a difficult time, try and enjoy your family and gather strength from those who love and care so much about all of you.
And to Heather....thank you for being my best friend and especially thank you for letting me be a part of your family. I love you all!!!! erin
Jamie & Jamie
Wishing you and your family a happy Thanksgiving.
Its great knowing your family is together with you today.
If there's anything we could help with back home or if you need help with Zeke & Aby please call.
Love & Hope
The Catalano's
HAPPY THANKSGIVING to Ava, Bray, all the boys, Jamie, Jamie, Heather and Billy, and also to my side that is reading this. I love ALL OF YOU VERY MUCH. Next year we can all be together again, and with our little Ava also. To my side have a wonderful day, to all our friends have a wonderful day. We will be seeing you in a few hours Ms. Ava!!!!!
love you
granny and poppy
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